Ibrance (Palbociclib)
Comments
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Yaelle and others, regarding joint pain : I had pain in virtually every joint and tendon when I was on Afinitor and Aromasine. That's all gone now. Either it was the switch to Ibrance and Faslodex, or maybe it is the low (5mg = a quarter of a pill) dose of paxil (paroxatène) I take every night (an anti-depressant) -- or else I've gotten used to the pain and can't feel it any more, or a combination of all that, but I think it is mostly the switch to Ibrance.
On another note : is anyone here on the Low-Carb High-Fat and intermittent fasting protocol put-forth by Dr. Jason Fung ?
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Hopeful you're fully right. We have special aquagym sessions for cancer patients which really are wonderfull. And I also try to walk daily (at least once a day).
Amarantha, since I'm on Ibrance/Faslodex I must say joint pain almost disapeared too.
I'd like to help you, but I never heard of this diet you mention. ... I'll google it :-)
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NettaGER- and everyone else-
I am new to this site and new to Stage IV. NettaGer- Our situations sound similar. I am 47 years old and premenopausal. I am on Leuproreline, Letrozole, and Ibrance. We started the 125mg dose of Ibrance , but 2 weeks in my ANC went to 900 so I was told to stop the med. We will recheck my blood levels in a week and go from there.
My question, for anyone, is if we have to lower my dosage of Ibrance does that lower the effectiveness of the drug?
Also, my MO didn't advise that I stay off work till my counts go up. And right now the influenza epidemic is going around our town. And we are seeing staff sick where I work. I have not been going to work because I am scared I will get sick, but I don't have a note from the MO to protect my job. I am reading these posts about low white blood counts with Ibrance does not correlate with increased risk of illness. Why??
Anyone still employed---how do you handle come- and- go situations with your diagnosis and work issues? Low blood counts, fatigue, Dr. appointments.
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candy-678: Welcome to this site, even though the reason for being here is rather sad. Indeed, our situations are quite similar. I keep my fingers crossed that your blood counts will recover soon. My blood counts have been quite good during the first 3 months, but I caught a cold during my week off after the 3rd cycle, which made me start with rather low counts into the 4th cycle ... and then I had to take 17 days of 2 antibiotics to get rid of 2 different bacteria in my nose. Therefore, my ANC is now completely screwed up, forcing me into a 2nd week off Ibrance.
I cannot give you advise on working issues, because the German health system is somewhat different and my doctor sent me into illness leave from work since I got the Dx. If I decide to got back to work, I will be able to take further illness leaves whenever I feel unwell (for cancer or mental reasons) or have an appointment at a doc. By the way, I am not sure about the proposed lack of increased infection risk with Ibrance, because I have never before been on antibiotics due to infections so long in a row.
Today, I am very worried. I appears that my (few) skin mets a becoming somewhat larger again and the lump seems to be a bit bigger as well. Maybe the Letrozole without the Ibrance is not working properly, which I can only see now while having the 2nd week off Ibrance. I do not know, if I should call my MO tomorrow to tell him or if I should wait for my appointment on thursday (when they do blood works again to hopefully restart with Ibrance). I also do not know, if this impression of mine would already qualify me for changing treatment maybe to Fulvestrant, or if they will wait until the next staging in end of Feb. And what if one will not see a negative outcome then, because the lack of response to Letrozole is overlaid by the positive response to Ibrance (as the staging in 11/17 suggested)? I feel not comfortable with potentially having a non-working treatment alone every 4th week.
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NettaGer, if it were me, I'd call the doctor tomorrow, explain the issue, and see if they might move your blood test up to tomorrow so that you could restart the Ibrance right away.
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Hi NettaGer, I don't know if oncology teams in Germany also have a "liaison nurse", but if you have one, I wouldn't hesitate for a second and call her. If not, I would call the doctor. They are best placed to evaluate what to do.
I know it is scary when you see the mets growing again, but it's a chance we have : skin mets are visible, so we see/feel them rapidly. Of course it is also frightning as there is no way not seeing them every day.
I understand it is frightening to have a "non working" treatment alone for several weeks. My doctor explained me that hormonal therapies are only of very limited help to me (low response score). However, I had to remain more than 1 month on Aromasin only, seeing the mets growing daily before getting the approval for Fulvestran/Ibrance.
I cross fingers and send you lots of positive vibes.
Candi-678, unfortunately, like NettaGer our health-system foresees automatically illness leave. I went back to work for a few months last year, but when starting targetted-therapy I was put again on medical-leave.
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Candy 678-
A poster was presented at SABCS in December that showed that there is no statistically different PFS based on the 3 dosages of Ibrance... and there is biological rationale based on the mechanism of action of Ibrance that not having to consistently wait an extra week or two before resuming the next cycle is more beneficial than prolonging the time offf medication in order to remain at a higher dose.
Ibrance has an average of 112 days as Time To Response, so it is very likely that you have not had sufficient time on treatment to see if it will be effective for you. Try the lower dose without fear that it won't be as effective; being able to tolerate it and complete full cycles is the most important thing.
I am just about to complete cycle 34 of Ibrance/letrozole...and the last 32 cycles have been at 75 mg, and every cycle I have been able to complete the full 3 weeks of medication and only take the suggested 1 week off before resuming the next treatment cycle. My experience mirrors what the researchers have found with regard to dose not not being correlated with efficacy.
I work full time in a hospital and other than a day or two of slight sniffles I have never been sick in the nearly 3 years I have been on Ibrance. I am careful (but not fanatical) about washing my hands, trying not touch my eyes and nose and so make a point of staying away from people who are coughing and sneezing. But I go about my daily work in a relatively normal fashion. As the months have passed I feel less and less concerned about my chronically low WBC and ANC and just trust that the precautions I take will keep me well. I am fortunate in that I work in a department that allows for some flexibility in my schedule and my oncology office is able to schedule my appointments at the end of the day, so I either go in early on appointment days or I works a longer day sometime in the week I have an appointment-- and at this point I am only seeing my one every 3 months. I get my monthly labs drawn before work and I get scans VERY infrequently (last scans were almost 18 months ago) and so scheduling time off for them isn't a big deal, either. I try to schedule other appointments on that day and get many things done on a day off.
Hopefully as you find the right dose and you get through some months without getting ill you will feel more comfortable. I bet you will hear from many others who have the same type of story as I do in terms of good response on lower doses, and not many episodes of illness related to low WBCs.
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Netta-GER I am in the same situation as you with skin mets that I can see spreading. It has been making me stir crazy, because it seems the oncologists pay so little attention to them, or to me, or my concerns, and the TEP scans do not really show that it is cancer. Of course the biopsies do. I have been documenting the growth with photos and sending them every couple of weeks when the oncologist is not seeing me. So far I don't think there is evidence the Ibrance working, but I have only been on it since the beginning of November. So I have a skin mets sister here. I'm glad, no no, I mean I'm sorry; LOL but you know what I mean
I too notice progression of the skin mets during the week off. I'd ask about changing to Fulvestrant. Or ask why not.Mica - thank you so much for sharing your experience and reassurance that smaller doses of the drug still work effectively. Cycle 34 - that's almost three years on Ibrance. Did it turn things around for you ?
Has anyone here tried fasting while being on these drugs ?
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Amarantha, will be hoping and praying there’s a simple answer to your skin mets. I’ve read in other places that Ibrance works very slowly so will hope it does the job for you and you end up NED. Let us know
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Another wonderful post/response from Constantine...this gives such hope!
The questions posed to Constantine by a member of the string:
Question: What about a rebound effect with Abemaciclib? What if I don't tolerate it or don't respond or it stops working (which it eventually will) and I discontinue it, will there be a rebound effect? I suspect that yes, there will be. I have read that that may be the reason overall survival benefits haven't been proven yet: people have longer progression-free survival on those drugs, but once they discontinue, there is a rebound effect and consequently they die sooner off the drug than they otherwise might have. Also, does anyone know the stable disease rate in Monarch1? I know the response rate is 17.5%, something like that, but unlike in the other trials, I haven't found any data on stable disease. Thanks!
Constantine's response:
Good questions, which in answering will I hope help to clarify the issue, and expose some rather clotted reasoning and invalid jumps to conclusions not supported by the data that many clinicians (Hurvitz, Ma, and others) are making:
STABLE DISEASE IN MONARCH 1 (ABEMACICLIB (VERZENIO)) TRIAL
As to your last (most recent) question, although secondary reporting sources sometimes omit, the stable disease rate was actually reported in the MONARCH 1 trial report (this is required by peer-reviewed journal standards that conform to RECIST reporting standards): CBR (clinical benefit rate: CR+PR+SD≥6 months) was 42.4%, of which 19.7% was the objective response rate (CR+PR) and 22.7% was the stable disease (SD) rate; this is a relatively high CBR for a median of three (out to 8) previous lines of metastatic therapies (any number of non-metastatic regimens allowed) that forms the subject population of the trial.
ABEMACICLIB (VERZENIO) PLUS PEMBROLIZUMAB (KEYTRUDA)
As I noted in these forums, SABCS 2017 provides further promising benefits of combining abemaciclib (Verzenio) with the checkpoint inhibitor pembrolizumab (Keytruda), where early hints the JPCE trial suggest benefit in pretreated ER+ disease without adding any additional toxicity, to be confirmed by the final report due this February 2018.
REBOUND: EVERYTHING YOU HEARD IS WRONG
Now, I'll take up the issues of REBOUND, via showing key fallacies in the literature discussing this much garbled concept, and it's even more mangled implications:
FALLACY 1: Ki-67 REBOUND IS THE SAME AS OR IMPLIES TUMOR GROWTH REBOUND
As to so-called rebound effect, there layers upon layers of confusions and misperceptions about this, due to garbled understanding by both the lead investigator (Cynthia Ma) of the NeoPalAna trial , who herself misstates the matter, and by Sara Hurvitz who both incorrectly interprets Ma's conclusions as well as herself garbling key distinctions. Although the claim - once understood properly - is empirical but only hypothesis-generating since as I will show below no one has any reliable evidence of it, nonetheless regardless of what further robust trial evidence ever shows, right now we can unambiguously reject Hurvitz's notion that the trial referred to (NeoPalAna) even remotely suggests that "the TUMOR may actually rebound". Wrong.
Hurvitz (mind you: "overreach" in interviews is common among oncologists, making rather sweeping if not soaring statements that in a journal NO Editor or Reviewer (like myself) would EVER tolerate!), and Ma conflate illicitly the concept of Ki-67 REBOUND - if indeed this is eventually validated independently in robust cross-confirmative trials, which it has NOT been to date - and the concept of TUMOR GROWTH REBOUND, that is, a clinically relevant and measurable increase in aggregate tumor volume post-termination.
These are NOT remotely the same. Ki-67 rebound is simply an increase after terminating an agent, transiently or durably, to higher levels than it exhibited while on the active agent, and it in addition just reflects the fact that the rate of proliferation has increased above the levels that the agent was able to lower them (Ki-67) to when active. It DOES NOT follow from such a increase (aka, rebound) that there is necessarily any true DISEASE PROGRESSION (which definitionally means an increase in total tumor volume). Ki-67 often spikes in such circumstances but may not lead to clinically significant worsening in measurable tumor burden (cells are simply proliferating faster, relative to a previous threshold, not uncommon in the "off-periods" of any agents cycle).
NOTE: Fueling the confusion is a commonly cited MD Anderson study [Bashour et al. J Cancer. 2017] which claims rapid disease progression following the discontinuation of CDK4/6 inhibitor therapy. It shows no such thing, being only a hypothesis-generating speculation based, moreover on a case series of exactly 4 (FOUR!) patients (and only TWO (!) of which suffer compromised survival). Note however, that although two of the patients who developed rapid disease progression after CDK4/6i withdrawal were lost prematurely early (before 6 months post-treatment), the other two actually proceeded to follow the expected natural history of the disease (one even surviving over two years after CDK4/6 inhibitory therapy discontinuation), so that is a wash. But it does not diminish the ultimate methodological compromise, that deducing anything from a population of TWO aberrant natural disease histories is rather an act of extreme chutzpah and lacks ANY compelling status.
FALLACY 2: ASSUMING ALL CDK INHIBITORS ARE EQUAL
The NeoPalAna trial, being (a) a neoadjuvant trial, and (b) a palbociclib (Ibrance) trial, has ABSOLUTELY NOTHING to say about abemaciclib (Verzenio) nor about the metastatic setting. No extrapolation across these boundaries is licit. Despite falling into the umbrella class of CDK4/6 inhibitors, these are VERY different agents with their own unique modes of operation: abemaciclib (Verzenio), as opposed to the other approved CDK4/6 inhibitors, exhibits far stronger potency / selectivity for CDK4, rather than CDK6, likely driving both tumor cell senescence (terminal growth arrest, aka "proliferative arrest" resulting in non-dividing cells, hence senescence constitutes an effective tumor suppressor mechanism) and ultimate tumor regression. This is true of abemaciclib and of, to date, no other CDK inhibitor. And of course, palbociclib (Ibrance) and ribociclib (Kisqali) require "off-weeks" to permit recovery of bone marrow function, in contrast to abemaciclib (Verzenio) which can be and is dosed continuously no off-periods. (And of course all the other advantages I have dissected, including record-breaking median overall survival (OS) of almost two years).
FALLACY 3: REBOUND ACCOUNTS FOR TO-DATE NON-EMERGENCE OF OVERALL SURVIVAL
You may have picked up the the impression - left likely by the Hurvitz and Ma confusions - that the failure of an as-yet demonstrated overall survival advantage must be secondary to this rebound. Not so. Across all oncology in every malignancy type we have been for some while seeing a trend of increasing PFS and decreasing, or no demonstrated, OS, but this is due to a complex survival factor "located" between PFS and OS, known as POST-PROGRESSION SURVIVAL (PPS), which - very roughly - tracks how much subsequent lines of therapy may confound or suppress reliable determination of overall survival (OS). It's been shown that when post-progression survival is much longer, as it is known to be in the hormone-positive environment, and with targeted and immunotherapies, as opposed to chemotherapies, then OS becomes a weak endpoint for clinical trials. In addition, OS emergence requires far larger patient populations, and far longer follow-up periods, than PFS.
Note further, in any event, the fact remains, as per the NeoAnaPal findings, that while patients who stopped palbociclib (Ibrance) two to four weeks before surgery showed a rebound in Ki67 when assessed at point of surgery, those who actually received palbociclib immediately before surgery did NOT. No rebound. And note that this is a "neoadjuvant thing" - having to do with what happens pre-resection (surgical intervention), and cannot be generalized out of this highly specialized context. And since the washout, as admitted by Ma, was abrogated on cycle 5 of palbociclib (Ibrance), and since as I have demonstrated elsewhere and in these forums, the long TTR (time to response) of palbociclib dictates deployment of at least 5 to 7 cycles to be a fair test of responsivity, the matter may be moot - EVEN IF CONFIRMED outside of this small and highly bounded trial (it was a single-arm Phase II trial with no comparator, and with all the limitations of such trials).
Finally, that while we at present lack data for overall survival from any of the phase III trials of CDK4/6 inhibitors (likely due to the confounding represented in the measure of post-progression survival (PPS)), nonetheless the doubling of PFS seen with the addition of CDK4/6 inhibitors to conventional endocrine therapies is unequivocally a breakthrough in the treatment of patients with metastatic HR+ breast cancer, not rivaled by any other agent to date.
Kind regards
Constantine
Constantine Kaniklidis
Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)
Oncology Reviewer, Current Oncology [journal]
Society for Integrative Oncology (SIO)
Member, European Association for Cancer Research (EACR)Note: I am finding this discussion and Constantine's wonderful input on the site "Inspire". Here's a link to this discussion:
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And good luck today with your onc, Enerva!
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Netta-GER- Thank you for your response. I agree that you should call your doctor and see if you can get in to see him/her before Thursday. That way you can check your levels and maybe restart Ibrance and also voice your concerns. Please keep us informed of what happens.
Netta-GER and Yaelle- I do not know what will happen with my employment. I spoke with my employer this morning and I am staying off work until Friday when I get my levels checked again. Also the influenza situation is about the same as last week. I explained to them that things are going to come up periodically since I am going to be on one form of treatment or another for the rest of my days. They really don't have an answer to that. So, my employment status for the future is uncertain.
mica1- Thank you for the information. So, as long as I can complete the cycles of Ibrance, the dosage doesn't seem to factor into the efficacy. I am learning as I go along. Thank you for sharing your experience as far as your work goes. I guess I will just have to be extra careful , especially for the rest of the winter (colds, flu, pneumonias), to try to prevent illnesses. As you said, maybe I will calm down as time goes on and I do not get sick. Right now I am fearful.
Thanks all for being there to help.
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mica 1-I forgot something. amarantha had a good question. You have been on Ibrance for 3 years. I guess it has been very successful for you then. How is your status? Does your doctor think Ibrance has been the key to your success?
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I haven't posted on here in a while but . Welcome to the new members. I have been doing well on ibrance with relatively few side effects except low neutrophils in cycle 1 and 2 but all styles down. My latest scans show that my bones ate stable. My last scan showed a liver problem which was later identified as a scar. A shady area or change has showed up again. I have had a ct, an mri and a liver not with liver contrast. Nothing can be determined from these 3 scans and radiographer won't sign the scans i have done off if he cannot tell for sure that they are clear. Any thoughts? Surely those scans must be enough to detect cancer? Am awaiting a PET scan. I feel great otherwise, no major side effects and stable feels good...except for this liver issue.
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Mica, wow, almost 3 years with annual scans on I/F? You're an urban legend! Great news and happy to hear your story.
Lillymillie, uncertain results are incredibly frustrating. Hopefully the PET will clarify the issue. I can't speak from personal experience, but have read where others have had liver biopsies to confirm testing. Good luck and keep us posted.
Candy, welcome, I'm sure you'll find great wisdom and comfort here. Hopefully you'll find, like Mica and many others here, that once you settle in to the Ibrance rhythms the side-effects subside and you can go about your daily routine.
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Ciaci...I also believe it's Letrozole causing it or it could be both but I started on Letrozole for about two months before Ibrance and my fingertips were already dry. My entire palms look as though they've been immersed in water for hours. The skin looks like prune skin, yet the skin is so dry that no amount of moisturiser helps. Every single line on my palms shows up like a road map.
Without going back through all the posts, to those who are asking about infections, considering we are immuno-compromised, I was told by my trial oncologist that, although we get neutropenia that can go up to Grade 4 the same as chemo, strangely enough they don't see the acute infections that Grade 4 neutropenia gives chemo patients. It's something that is being investigated.
Also, I've been told NOT to be around crowds and to avoid being near anyone with an infection of any kind. I wear a mask when I go to the Cancer Centre to avoid infections as it's in a large public hospital and I smear my nostrils with Bactroban, an antibiotic ointment, if I go to the shops. It works.
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Has anyone had the flu while on Ibrance? I'm going to PCP today to find out if I have it or not. I'm curious if MO will want me to go off TX if I test positive. I'm supposed to start back on Friday, right now I'm on off week.
Also, I was supposed to have my PET today, had to reschedule for next week. I've been coughing so much, I don't think I could lay flat and still for very long.
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Grannax - I don't have answers to your questions, but I wanted to tell you that I hope you start feeling better soon. I can't believe you have the flu, on top of everything else you are dealing with. Please take care of yourself. I will be thinking of you.
Claudia
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Too all those discussing neutropenia caused by Ibrance, the reason that you are not more susceptible to infections is that the Ibrance just transiently arrests the growth of those cells, rather than killing off the cells the way chemo does- so when the drug is stopped, the cells go back into their growth cycle and you can recover faster
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Grannax, I got the flu 2 weeks ago. Mine went into pneumonia but it was stopped with the correct antibiotics. I still cough some, but it is improving. Fortunately for me I have no scan scheduled so I am just pushing through it. My MO does not stop my meds because I am able to recover when I get sick--I am on cycle 20. I am sure it is different for everyone. I think it is important to know if you can recover without stopping Ibrance, but if not, I was told a small disruption is not that grave. This is, however, the sickest I have been since starting Ibrance. I still don't feel very good, but since I am retired and have few responsibilities, I can do this.
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Very short of breath today. My red blood counts are probably under normal, as they were only a fraction of a point above last Thursday. I think shortness of breath can be attributed to that. Not having any other problems at all, that would make me think something is wrong with my heart or lungs. What do you all think?
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Very short of breath today. My red blood counts are probably under normal, as they were only a fraction of a point above last Thursday. I think shortness of breath can be attributed to that. Not having any other problems at all, that would make me think something is wrong with my heart or lungs. What do you all think?
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Intolight I've only had to stop ibrance once for two weeks. I've heard it does not change the final result, also. But, maybe just having the flu is not a reason to stop. I dont even know if I have it yet. Did you have any fever with your flu? I have a little low grade.
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Grannax, I only had a low fever also, 99*. After 5 days when I finally went to the Dr it was still 99*.
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PatG : A Flu Story or just a case of the Black Plague? I'll never know.
I'll jump into the flu discussion with a little personal experience....5 weeks of personal experience! Yikes! I really don't know if I had "the flu" because I was too sick to go in and find out. My husband wanted to call an ambulance when I couldn't get from the bed to the car to go to the ER. He made appointment after appointment for me to go in and see my oncologist but I just couldn't go. When I finally went in, my doctor said he was getting ready to come to our house!
My fever didn't go above 99+ degrees (my usual experience) and only lasted a couple of days but I realize, now that I've read the symptoms, that I had pneumonia. Fortunately, the onc's nurse had phoned in exactly the right antibiotic and also an assortment of treatments for that nightmare of a cough. That cough, people, ranks in there with the worst experiences of my life. It began the day of my PET/CT and I coughed so hard blood came up. I didn't tell them because I knew they'd take me right over to the ER and I'd have to reschedule the scan. I don't know how I managed to be still for the scan except that I sang my usual hymns and prayed hard.
The next day the cough got so bad all the muscles in my torso hurt and I really thought my ribs would break. How's that for drama, my friends?! The area around the port hurt so much I couldn't lie on my sides or my stomach. I had some symptoms that concerned me....my lungs alternated a wheezing sound and a crackling (like Morse Code!). I could hardly eat or drink though my sweet husband kept trying to make me. Every time I coughed I wet myself. It took all the energy I had to walk to the bathroom so that was probably a good thing! (Sidenote: I was so out of it, I accidentally flushed one of those Poise pads and my husband had to have the plumber come!)
When I finally went to the doctor two or 3 weeks later, my port wouldn't give blood for the first time since 2012. The nurse said it had clots which heavy coughing often causes, so she had to de-clot it. At that visit my heart rate went so high they were sending me to the ER. I assured the doctor I could calm it down if he'd give me time to do some deep breathing. He smiled and said it was far beyond that but I could take a bag of fluids and see if that helped. Thank goodness, it got low enough to let me go home. (Alert: Dehydration makes your heart race.)
I'm telling you the details of this so you won't do what I did. Don't think you can make good decisions for yourself when you're that sick. The worst that can happen is the EMTs come and declare you're not bad off enough to go in an ambulance. The best that can happen is you go into the hospital, get fluids and antibiotics for a few days and don't die or spend 5 weeks in bed! I did have a moment I will always treasure when I thought I might die and I was at peace. That might have been worth all of it and I thank God.
So now that I've worn you out with the details, my advice is don't do what I did. My doctor tells me I didn't get this because of Ibrance. He reminded me that this doesn't work like having low counts with traditional chemo, beside the fact that my counts haven't been very low. I did stop taking the Ibrance the day I got so sick and, since we had already discussed me taking a break from it, I chose to be off until mid-January. That will make 6-7 weeks without it and, even if the cancer advances during this time, I'm not sorry. I'm thankful to have a week or two without that fatigue!
What now? We will decide Monday whether I'll begin 75mg of Ibrance (for which many of you give me great hope) or if I'll start Verzenio (sp?). The doc will give me his thoughts on why he is leaning toward Verzenio in hopes that I will have less of the fatigue and a better quality of life. We shall see!
In the meantime, I pray for all of you...that you will either avoid the flu or get over it quickly and that your cancer meds are doing their job.
God bless you and forgive my exhaustive story! (Also, get online and order yourself some nice pajamas in case you have to go to the hospital someday. Macy's has a big sale as does Land's End. UPS delivered and I'm all set!)
PatG (Winner of this week's long-winded award on BC.org!)
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Pat G. I love long stories but this one takes the cake. Yes, you win whatever prize you can get.
Thank goodness, I did go to my doc today, three days into my symptoms. Yes, I tested positive for Type B flu. My temp was up to 102 by the time I got to the doc. I'll start Tamiflu tonight. She said it could take two weeks, but that's better than five weeks.
She said to stay off Ibrance for two weeks. Also, to cancel PET that I rescheduled for next Tuesday.
I finally got home and was hurting so bad that i just curled up in bed after taking Tylenol and inhaling water. That's all I wanted. It helped. It felt like every muscle in legs, shoulders and joints were cramping. I didn't want to move.
I'm not sure I've ever had flu before. I think i must have gotten it when I went to the grocery store on Saturday. I guess I'll wear a mask next time.
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Grannax, if the prize were really a cake I would take it. My taste buds are back!! I'm really sorry you're so sick and I promise to keep praying this passes fast. You aren't going to want to drink but I hope you will. My nurse said to get Gatorade or something like it. Take care, my friend.
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Jaylea and amarantha-- I have been on Ibrance since June 1, 2015--almost 32 months....and actually my onc and I always wonder just a bit if I would be doing equally as well on letrozole alone (along with the periodic zometa infusion...). Considering that I was de novo stage 4, it is very possible that the majority of the reason for my good response is that I have had no previous anti-hormonal treatment in a neoadjuvant setting. But that's just pure speculation. We do concede that I fit the preferred patient profile for this combo-- de novo stage 4 (or greater than 12 months since completing an AI medication in a neoadjvant setting). Also considering that to achieve the 24-27 month PFS (more recent data analysis demonstrated 27 months PFS from the Paloma trials) there must be a number of patients who surpass the average PFS duration; so while I am IMMENSELY grateful to have had a sustained response, it actually is not that remarkable. There has to be a number of patients who surpass the PFS mean in order to balance out those who have progression sooner than the PFS duration.
I actually have scans tomorrow (CT and bone scan) --the first I will have had in over 17 months; we will see how well I really am doing! My lobular cancer abdominal mets have never shown up on any scans (the multiple bone lesions do in all modalities) so that's why I have deferred them after having three consecutive every-6-months sets that didn't show anything new in the first year and a half ... my labs have remained stable the whole time. I feel better than I have since diagnosis--have more energy, my labs are good and for the first time ever my CA27-29 has been in the normal range for 2 months in a row (and actually only for the 3rd and 4th time ever--I usually hover in the mid 40's to mid 50's range after falling to that live over the first 8 months I was on medication.) I'll post an update when I get the results...Hopefully I still have low-level, stable disease.
And I do try to fast for 13-14 hours every night; I am usually able to do that 5-6 nights/week. I don't do longer fasts, though.
Here's hoping that we all get long and durable responses to Ibrance!
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PatG---
I LOVED your story!!!! Not because you were sooo sick. You should have went to the ER wwaayy earlier. But I laughed out loud when you said you flushed the Poise Pad and had to get the plumber. I needed that laugh. I am glad I found this site. You girls are my friends.
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PatG - Wow! You definitely get the prize for best story! I'm so sorry you went through all that, but very happy that your feeling better! I think you're story explains why my Mo was so adiment about me getting a nuepogen shot yesterday. Normally, if I am at .9, he only insists if I am going to visit my grandkids. Yesterday, I balked at the shot, but he was immovable. He even insisted that I get bloodwork done before going back on Ibrance. I left angry and frustrated with him. I guess I should cut him some slack. The 75mg Ibrance has been working for me for 21 months, for 5 months, I was on100mg, but had no qol. I feel blessed that I have gotten 3 1/2 years on Faslodax and Xgeva, and a little over 2 years on Ibrance and Letrozole. I am 4 months away from 6 year survival. Verzenio(sp) is our next line of treatment. Im so glad that you made it through! We really count on you here!
Grannax - Like PatG said, please keep hydrated! Every time I get sick, I end up in the ER, dehydrated. My tell for dehydration is that I feel weak and I start to shake. Dh doesn't even ask anymore, he just bundles me up and takes me to ER as soon as he sees me shake. If you don't drink Gatorade, (i don't), try Eternal Water or Life Source, one of the waters with natural electrolytes. I have heard that some people even drink Pedialyte(sp). Get well soon.
Hugs and prayers,
Claudia
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