Ibrance (Palbociclib)
Comments
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My PCP concurs with the radiologist at the urgent care clinic-- there may be something on the X-ray, but it's not adding up to pneumonia.
My neutrophils and whites are just fine.
My doc and the nurses at two clinics let me know today that I look awful. At least I know they are honest.
Anyway. Y'all. I hate to even say it, but congestive heart failure crossed my mind tonight. Lord have mercy...
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Lulubee - Good Grief. The medical issues are enough stress when they aren't a mystery. Thank you so much for letting us know. Thinking of you. Are you more comfortable?
>Z<
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Apg - It is quite funny you should mention viral therapies. One of the oncs I consult with is crazy about viral therapies and Oncolytics specifically. He firmly believes it is The Cure. I have looked at it but found viral therapies to be very very early. I don't see myself doing it for a while. You can look at the Oncolytics website and see from the news posts that Oncolytics hasn't had exceptional clinical trial results. They are really struggling.
But it is still worth googling and reading about viral therapies because it is so cool. And there are many people doing it, not just Oncolytics. Here is one trial at the Mayo Clinic in Rochester NY for breast cancer patients if you are feeling super adventurous. There is an article about this Mayo trial somewhere if you google. They had one woman with MBC who is in total remission from the treatment. But it is also clear they really don't know what they are doing. And seems that you don't get two tries with that stuff. I am waiting.
The immune system is very powerful and as likely to turn on you as it is to turn on the cancer. It's taking them a while to figure out how to control it, so I prefer not to be in first in human immunotherapy trials. There are, in fact, immunotherapies that have been around longer and are a lot better understood. I am looking at those first.
>Z<
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Well said Z. Your comments on state of immunotherapy for BC are spot on. For TNBC folks there is more hope from immunotherapy in near future.
I guess what we all discuss here is our desire to live or let our loved ones live at any cost. I for myself is trying hard to save my family. So we grasp at every straw in front of us.
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Cure-ious,
Interesting indeed. Wonder how long will it be before we have a drug that leverages this finding. The huge gap between laboratory and clinic has always been the problem of cancer therapy.
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In ER for tests... woke up w RHR 108, still uncomfortable.
I am pretty sure I will be barfing up contrast shortly. It's my special talent
Missing the wedding of two dear friends over this. Phooey.
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Moissy, Thanks for sharing your approval info. I'll have to be patient, but every time I cough I think of it again. good luck to you too
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Lulubee - I'm so sorry you are in such discomfort and having to miss the wedding. Hope they get this figured out soon. Hope you do NOT get the chance to show off your contrast talent on this visit!!!!! Feel better soon.
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Z, I agree! I am just hoping that research on viral immunotherapy turns out to be the biggest breakthrough in cancer research. That is how my friend feels about it. He thinks it will change cancer treatment and that people will be cured and I pray he is right! I am still feeling great from my trial in on now. Gedatolisib has not been hard to tolerate yet. I had fatigue the same Day and I get a little bit of a sore throat. I've only had 2 treatments and almost 2 weeks on ibrance/femara. My 3rd trial tx is this Monday! I am hoping it stays this easy. I had a port placed for my trial IV tx and I was very frustrated to find out that it can't be used with the Gedatolisib. They can't flush with saline because it gels with the drug. They have to use dextrose and they don't want to put that through my port. Needless to say I was pretty frustrated. I have been poked so many times over the last 2 months and I only have one arm that can be used since I had surgery. Also my veins in the arm that can be used is not good due to getting chemo in it! Wish I would have done the port from the beginning but I thought I would have 8 chemo and be done. Never crossed my mind I would have metastatic cancer 9 months after original diagnosis!
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The verdict is in: pericardial effusion. About to be admitted for a couple of days.
This is my second rodeo with this complication. When I initially recurred in 2010, I was disqualified from a trial because the preliminary tests turned up moderate pleural effusion from mets in the sac around my heart . It reversed when I started on Femara. This time it's worse andI just hope Ibrance can kick it.
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Sending healing thoughts your way, lulubee. I'm so sorry you're dealing with this, but glad it's been identified and that you'll get the care you need for it. Prayers for a fast recovery! Deanna
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((Lulubee)) Dr. Google says that pericardial effusion is fluid between the heart and the sac surrounding the heart, but it doesn't give a cause. What do you think is going on?
Apg - Thanks for raising this question as it has prodded me to dive back into this topic. Things look a bit better than they did last year. Here is the article about the Mayo Clinic trial on oncolytics (viral therapy). I was wrong that the trial is "first in human". I am still not quite ready to sign up, but encouraging.
Oncolytic virotherapy – using re-engineered viruses to fight cancer – has a history dating back to the 1950s. Thousands of cancer patients have been treated with oncolytic viruses from many different virus families (herpesviruses, poxviruses, common cold viruses, etc.). However, this study provides the first well-documented case of a patient with disseminated cancer having a complete remission at all disease sites after virus administration.
It's worth reading that article and following this closely. This is the actual trial ... not an MBC trial.
I went through clinicaltrials.gov for the oncolytics (viral therapy) trials that do accept MBC patients.
Phase II SBRT and Oncolytic Virus Therapy Before Pembrolizumab for Metastatic TNBC and NSCLC
I love SBRT as I have a good friend with renal cell cancer who, as far as we can tell, is in remission due to SBRT and the care of a complementary onc that we both go to. She refused everything else, not that she had many options with renal cell cancer. SBRT triggers an immune response so this trial is an immunotherapy triple whammy where they three modes of immunotherapy. Very interesting. TNBC only, but those of us who are PR- might be eligible for the TNBC trials.
Phase II A Study of Metronomic CP and JX-594 in Patients With Advanced Breast Cancer and Advanced Soft-tissue Sarcoma (METROmaJX) (METROmaJX)
This is a fun trial, first because it combines a pox virus with my favorite chemotherapy innovation: metronomic low dosing. And, second, because it is only in France. My european friends should look at this one. And phase II, which means they didn't kill anyone in phase 1. Cool.
Phase I Viral Therapy In Treating Patients With Recurrent or Metastatic Squamous Cell Carcinoma of the Head and Neck Cancer or Metastatic Breast Cancer
This one is at the Mayo Clinic in Rochester and accepts MBC of any flavor, as long as you have progressed on hormonals or the first line HER2+ treatments. Phase I. It is not the one discussed in the article above and I don't know anything about outcomes on this trial.
Like most immunotherapy trials, this is for our TNBC friends who are not likely to be following this channel, but the folks who are PR- might still have this on their radar. Anyone with a hankering to inject themselves with engineered herpes virus should follow this trial.
I don't understand why viral therapies seem to target TNBC because it shouldn't (?) require the same kind of immunogenic characteristics that other types of immunotherapy do. You aren't leveraging T-Cells. Maybe it's because they can get the TNBC patients sooner because they fewer treatment options? Lots I don't understand about oncolytics.
But there are a lot of smart people who think oncolytics is the cure. I am glad to see these trials progressing. A couple of these are new since I last checked. In principle, I could do oncolytics but none of the trials look like a good fit for someone on first (or second) line treatment for ERPR+ MBC.
That said, APG, the Gedatolisib trial you are on is a frontrunner if I progress. From what I understand from your posts, you are tolerating the triple attack (CDK4/6, PI3K inhibitor, hormone blocker) well. This could be great. I am following your experience closely. Do you have any idea how other people are tolerating this combination?
The standard medical opinion is that this disease WILL kill me. We lose people on this forum every month. The standard of care approach is not promising and this informs the way I evaluate the risk of trials. I am afraid that if I wait too long to try some of the new treatment options, it will be too late. I also have my doubts that many of the immunotherapy treatments will make it to clinical practice, even if they are effective. (Long explanation for that.) I suspect that the only way I will get some of these treatments is in clinical trials. I'm ready to jump in at the first reasonable option ... and there are in fact many.
>Z<
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Even though I'm soon off Ibrance, if it's ok I'd love to stick with you all - what an amazingly knowledgeable and generous group.
Lulubee, I'm so sorry to hear what you're going through. Wish I had some great advice or knowledge for you - hope support from afar helps too!
LMWL, what is your wife on (if anything) as you await more info? I think we are in similar boats and I was just about to start Xeloda as I await a 2nd opinion, but now wonder if I should, given what they told you about possible disqualification from trials. I would wait for the 2nd opinion I hope to get from an MO very familiar with trials, but I'm not sure how quickly that will happen and am nervous about being on nothing (for now I've been continuing with Ibrance while waiting for Madame X to arrive, just to have something going after Faslodex was stopped too). It's been about a week on just that and a fresh Zometa infusion. How long can I wait safely?
Also, which of the promising trials don't allow previous use of Xeloda? I'm disappointed that SANDPIPER doesn't allow prior Faslodex, so would love to avoid that problem again with X. I suppose it's a risk we take with any of these treatment lines, though.
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Cure-ious and Z. I did go ice fishing Friday night in WI and caught this beauty. It was wonderful to get away with family and do something fun. I can pm you Cure-ious with my favorite authors if you want. I try to read every night before I go to bed. Get a library card....free downloads to your kindle or IPad. Good escape!
lLulubee, I'm so glad they now have a diagnosis and you can get the proper treatment. Maybe a nice sponge bath from a good looking male nurse. We have a few cute ones here at the University of Minnesota Hospital. Sending healing thoughts your way.
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My wife is just on Letrozole right now as she awaits her next treatment. Her biopsy is done and we are waiting for the results sometime this coming week.
The oncologist did not specify which trials will be excluded if my wife starts with Xeloda. She basically wanted to wait for the biopsy results to come back before discussing details. She happens to be the Director of early phase clinical trial @ UCSF, so i trust her judgements on that (http://cancer.ucsf.edu/people/profiles/munster_pam...).
I will keep on updating here and please feel free to send me a private message if you want to discuss further.
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hi, I haven't really been keeping up with all the posts (apologies for that) but I mentioned a few days ago that I am scheduled to start ibrance in 2 weeks. In reading the early pages of this thread there was mention of hair loss or thinning?
I just finished chemo in November and my hair is just barely growing back! Has anyone had their hair grow while on ibrance?
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Lulubee- Sending hugs and hoping the situation improves quickly!
Mediclisa- sounds like the ice fishing was a great way to spend the day!
Hi Deanna and everyone else I missed
LMWL- I gain a sense of control by researching potential medical and complementary treatments - I think it is a strong approach at trying to live fully. This continues to be a great forum for quality information.
APG and Z- Thanks for all the immunotherapy links! It would be great to have something to propose when letrozole and Ibrance fail.
I'm now suggesting labs to my MO prior to restarting Ibrance as she doesn't seem to remember that my white counts tank. Plus a new thing on lab reports...poikicytosis- +1 >25% of rbc deformed which impacts their ability to carry oxygen. Has anyone else seen this on reports? Three weeks off last cycle and at least two this time. I'm already at the 75mg so we will see. Seems weird to be semi foggy after two weeks off the Ibrance...exercise helps thank goodness!
Casun19- the stats say 22% experience hair loss. Mine has continued to thin, but still okay.
I was wondering how many patients oncologists see and found one figure that the average number of new patients per year is 250. I know some of us leave each year, but how in the world can they keep track of all the unique factors in all these cases? Even more reason to educate ourselves about our specific disease rather than hope they really know it by looking at the notes just before our appointments.
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Kathyrn - Even if I was my MO's only patient and she spent the rest of her time researching cancer options for me, she is human and can't know everything. In reality, she is overloaded with a bizillion patients. If we are lucky, MO's manage to stay up to date on the current standard of care in their field, which is usually chemo/systemic therapies. This is why I assemble a team, read, discuss and generally manage my own care.
I am extremely grateful for this forum where I can follow other smart proactive people with great doctors. I appreciate that people take the time to share their thinking process, treatment options and decisions. I try to do the same. The discussion and debate helps us all choose our own path in this minefield.
Casun - some people lose hair, some don't. I am not losing hair but I was afraid I would, so I use shampoo/conditioner products popular among the cancer thrivers in my town. I can't say it stops hair thinning, but it definitely gets more out of the hair I have. Someday I will post a picture of myself on one of my big hair days after I have used the stuff. Better than the alternative, for sure. PM me if you want the specifics.
LMWL - Fingers crossed for actionable biopsy results and good treatment and/or trial options from Dr. Munster. You can't do better than UCSF. On the edge of my seat for the results of the discussion. You really are amazing. My husband is overwhelmed by this. We're way past the limit of what he can handle as far medical discussions go. He's wonderful, but in different ways.
>Z<
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Z, thanks for posting what you have researched on viral immunotherapy. I want to follow it closely even though I have just started my treatment because I know there will come a time when I will need to move to something else. I'm just praying I get a long run out of ibrance/femara/Gedatolisib. I am hopeful the pi3k pathway along with the other will keep be stable for a very long time. I don't know if I just haven't been on treatment long enough or if I am just tolerating it well but I feel good. I work 4 days each week. I have to miss the day of infusion because I go to Ohio state which is 1 1/2 hours from my home. So far it has not interrupted my life much except the day of. I have 3 kids and they are all in activities. I run all the time to sports and Girl Scouts and other things along with working a job that I wait on the public and keeps me busy the whole time I'm there. I go tomorrow for my 3rd tx. I am anxious to see what my scan will show in a little over a month. The trial requires me to get scanned every 2 months. I hope it works not just for me but lots of other women in the future! When and if this combo fails I would certainly take into consideration one of those trials!
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lulubee, if this is is any consolation at all, cardiac issues can be so well managed. I'm certain they'll have you tuned up in no time. On the other hand, give me a break! Medical issues on top of this wretched disease is just fundamentally wrong. Love and Hugs, MJH
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Posting from my hospital bed. Lots of stuff happening here. If it gets any busier here in my room, I may have to hang a disco ball and serve drinks.
Early yesterday morning in ER, my blood labs showed a high D-Dimer score (which measures clot by-products in the blood), so they did a CT right away. My onc and I were both anticipating a pulmonary thrombus-- I mean, MTHFR + high D-Dimer + dyspnea for days = lung clot, right? But no.
My new PCP was on call, incredibly (big city hospital, huge campus). He wins major points for showing up on a Saturday morning and hanging in there with us most of the day. He admitted he is grasping for the big picture of my various health challenges and their interactions (I first saw him just a couple of weeks ago, so that's fair).
After EKG, X-ray, and CT, though, I began to pick up that he was questioning why the ER doc wanted to admit me. Next, he directly questioned my assertion that lobular mets are causing the effusion. With that, it hit me: 1) he is not an expert in MBC (again, this is entirely fair), and 2) it suddenly dawned on my Dilauded-dulled brain that perhaps *nobody* in ER was assuming that the fluid was *proliferating* and *driven by metastasis*-- which would mean they were thinking it could be whipped by ordinary effusion treatment like diuretics, etc. OH MY. I knew then that I needed to advocate quickly from another angle. The phone in my right hand was not visible to the PCP doc, so I texted my onc-- "7 hrs in and nobody is talking echocardiogram. Need info re degree of effusion, correct?? Should I be advocating for echo?" I mean hello, a big effusion can kill you, and I knew this one would be growing. Within minutes the echo machine came wheeling in (how I love my onc), and sure enough, I had a beauty--graded "severe".
The moral to this tale: trust your instincts and ALWAYS SELF-ADVOCATE.
The cardiac team was already in ER for a heart attack, so they were ready to go. That was a boon. They knocked me out in the cardiac OR, inserted a catheter in my pericardium, and drained off 700cc of bloody fluid. Immediate relief. I am now dangling a drain tube and big flat bag. They wheeled me directly from the cardiac unit to a private room. It's the newest wing, and the room is very nice.
To give you some sense of proportion- the heart normally swims around in about 1 ounce of fluid- a jigger. They drained off approximately 23 ounces yesterday, and it's still draining. I lost 4-5 pounds of fluid weight overnight.
The onc comes in assuming that it will continue to drain some and that I might need a heart window installed... while the regular doctors and nurses come in super chirpy about how the effusion is handled, and they will remove the catheter tomorrow.
I would not want to be my PCP this morning. He's a good doctor with a great rep-- but I am a three-ring juggling act of a patient. I saw him in his office the day before this ER episode, and he must surely know now that he did not ask enough questions about my heart. He looked at my chest X-ray and ruled out pneumonia, which to be fair is what I had asked about... but ya know, pneumonia symptoms can be almost identical to heart symptoms.
But... with apologies to Monty Python... nobody expects the pericardial effusion. Except for maybe my onc and me, because we've seen these birds before.
"A double-holstered MTHFR mutant and a sneaky MBC walk into a bar..."
Today, stuff is still draining off my pericardium into the bag, and it has some long, thin, stringy clots in it. My lung crackles are almost gone.
I've been taken off Ibrance for a few days at least, staying on Aromasin for now. They don't want my neutrophils sliding right after the heart procedure and with another procedure possibly on deck (the window). My onc's partner, the one on call this weekend, reviewed all of my scans since 2010 (give the guy a medal, right?), and his theory is that I have probably been harboring low volume pericardial mets ever since my mets dx in 2010, but ongoing treatment has successfully held them back... then when Xeloda started failing in the fall, they took off unchecked. He suspects the peri mets may be more aggressive than my bone mets. Super duper.
My big frustration at the moment: the cardio doc who put in the catheter came by earlier and chirped that it looks great! looks like the stent took care of things! and he'll probably take it out tomorrow! I said well, you see that it is still producing fluid and it may be unlikely to stop as long as I am off cancer meds. Him: "It may not be cancer causing the effusion at all!! We will just take it out and see how it goes." Oh goody, let's all go to Disneyland and wear mouse ears. I told him to consult with the oncology team before he makes any decisions. I don't really care if that insulted him. It's MY heart.
I feel a cancer refugee, like I've been pushed away from shore on the lovely land of NEAD, and I don't yet know the name of the continent on the horizon, nor any of the local customs. But I know things are gonna be very different wherever I land.
Thanks for letting me get even more junk off my chest, LOL. You're all the best.
ps. Please get tested for MTHFR gene mutations, ladies and gents. It's another piece of the puzzle, and it matters.
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Apg - before you get into that kind of (really out there) immunotherapy trial, you'll want to exhaust hormonals. Faslodex is a great second line option and now can be combined, in trials, with groovy new drugs sorta like what you are on now. But I agree. If and when we progress we have just a few stressful weeks to decide what the next step is. I had a brief taste of this over xmas break and I know that my mind will pretty much shut down if I should progress. It's good look at this stuff and know, well in advance, what you are comfortable with and what you are not comfortable with. So lets follow this stuff...
However, the top priority is getting you a long long run on your current treatment.
Lwrite - poikilocytosis is interesting. It's mis-shapen red blood cells. From what I have read (briefly) it looks like a nutritional thing. It can be caused by a vitamin deficiency (e.g. vitamin B12 or folic acid), in which case the treatment is to replenish the deficient vitamin. It can be caused by a digestive disease, such as celiac disease, in which case the solution may lie in treating the underlying celiac disease so that nutrients can be properly absorbed.
I wouldn't assume it is caused by the ibrance but don't ignore it. This should not be going on. It feels like one of those metrics of overall health that you need to manage. The foggy brain thing has that mojo as well. Naturopaths do well with these issues.
I found it amusing that poikilocytosis is common, and normal, in goats. Any ruminants in your family tree?
>Z<
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APG- I agree w/Z, oncolytic viruses are really not ready for prime time. For your trial, you definitely get the gedatolisib, no placebo possible? And, assuming that to be the case, how long before Afinitor normally shows bad side effects? Its encouraging that so far, so good- this, like Ibrance, is another drug from Pfizer?
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Lulubee, I'm so glad you advocated on your behalf! Bless you that you have to go through all this. I will be thinking of you.
Cur-ious, I am definitely getting it. There is no placebo arm in this trial. It is through Pfizer. They really can't tell me anything about it because they don't know. They just know that they haven't heard any negative bad things happening because that is all they get updated with. I can say that i feel really good. I have always tolerated meds well though. Even when I did A&C I didn't do too bad on it. I mean don't get me wrong it wasn't fun but I still worked 7 days out of a 2 week period and was able to go to my kids events then too. I am really praying that it continues to be easily tolerated and that it works of course! I want it to help every woman it can so I will stay on this as long as I can!
Yes Z I'm hoping it is a long long run on this. I agree that I probably will have another hormonal option before I would do anything like immunotherapy. I'm just hoping it will be several years before I need to go there and that it is more advanced and a better tx when that time comes! Lots of new trials is exciting that maybe one day even if it isn't curable but it will no longer be something that progresses. Treatments may allow women to still live long lives. I'm only 37 and I am determined to be here so I'm trying to learn all I can! You are very inspiring to me. You are teaching me so much by reading your posts
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Lulubee - Wow! What you've been through. I so appreciate your humor and can't believe you have the stamina at this point to write about all the craziness. Thanks for the reminder that not everyone gets the big picture when it comes to MBC. Thankful you have such a responsive onc. Rest well tonight. Hope we hear from you soon that you have broken out of the joint!
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I started ibrance 11 days ago, and (knock on wood) so far no side effects. I will have bloodwork done tomorrow for wbc, etc. with my loading dose of faslodex. I know that I might encounter fatigue as I go further in the 3 weeks, but just wondered if you started pretty good with side effects if it tends to stay that way?
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lulubee, you are incredible! I hate that you are facing this, but so admire your courage, knowledge, and sense of humor. When, I first read of your cardiac developments, I guess I was one of the "chirpy" ones, and I apologize for that. I thought of my experience with my Dad's CHF. Leave to this idiot of a disease to make everything more complicated. Major kudos to you and your MO for getting right; it is so important to advocate for oneself. Holding you in the light and hope improve quickly and go home. MJH
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Apg, I would be pretty mad, too, to find out my port couldn't be used for treatment (your gedatosilib). I'm kind of militant about using my port. I gave the poor nurses a hard time when I was ill with a fever and they wanted blood from my arm, until they explained they had to rule out a port infection. Well, the port is there for you when you do need it. I'm so glad to hear you are tolerating the treatment well!
Lulubee, what a story. You are a good writer. Amazing you found so much humor. As my grandma said, we have to laugh so we don't cry. It's scary to think about how things could have gone if you hadn't been such an incredibly informed patient and well enough to be involved. Let's all try to make sure we know a way of quickly contacting our oncologists like you did. It is scary that with all the training doctors do, there are still so many times they just don't know or do what is needed. Hospitals seem especially problematic. I have seen two (non-cancer) cases where the on-duty hospital doc changed a patient's meds against the standing orders of the patients' long-time specialists, who then changed them back. Anxious to hear what your onc will recommend for you. P.S. Re Monty Python -- During my taxol chemo, it was all I could do upon entering the infusion room to not cry out loudly, "Not the comfy chair!"
As Z says, I think it is good to think about possible treatment plans in advance. And also to get established wherever we would want to go for a second opinion. I regret not lining up my chosen second opinion place -- the best place I can think of -- before this. I have started the process, but I'm not sure if I will get an appointment before I must make a decision on treatment plan. I do have a second opinion appointment elsewhere, and I got my scan moved sooner. Now after that time-consuming round of phone calls and schedule wrangling, I must do the weary work of choosing and faxing medical records asap. I asked my onc why the long washout, and she said she wants to see if the fatigue is from cancer. But I do not think I have any worse fatigue now than over the past two years. I am disobediently taking letrozole still, though not Ibrance. Do I have to confess?
Hi, there, nbnotes and welcome to the thread. If anything, I think my body adapted to Ibrance and the side effects lessened. For example, gastro touchiness went away. I did get a reduced dose early on because of mouth sores.
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Cure-ious, thank you, I did look at the trial with gedatosilib, but it is for PI3KCA and I have PI3KC2B. I wish I understood more about this and whether the drug might work anyway. If I could only get a biopsy to see if new mutations show up that might be useful. (Last scan was inconclusive.) I really think a drug for mTor/PI3K is a good idea for me, but so many trials specify PI3KCA, and the pan-class drugs are so toxic. My onc couldn't tell me exactly what kind of mutation afinitor is for.
Zarovka, your advice to say to myself "Let's see if I can make dinner... yes I can. Let's see if I can call the onc ... yes I can. Let's see if I can go for a short walk, yes I can" have been very helpful to me. Thank you for the encouragement to keep strategizing.
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Wow, Lulubee, Wow! You give the best message anyone can hear, be in touch with your body and symptoms and learn to advocate for yourself. I hope you are feeling stronger and better each day. Thinking of you.
I just finished 2nd cycle of Ibrance and letrozole. First cycle, I got sick, counts were low and I was kept off an additional week. Very normal from what I've read. 2nd cycle 2 weeks in my blood counts looked good and I felt good. Towards the end of the 3rd week I felt the fatigue but by the end of the weekthe respiratory virus had hit again. It has knocked me out again but not as long this time. I am meeting with my onc this week I am curious if this is just a fluke or am I wired to pick up respiratory virus every time.
Also, curious are there any numbers to tell how many are currently on Ibrance? The oncologists seem to have so many different approaches to this drug combo. Wondering if in time they will be more protocols for them to follow .
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