Are you currently (or have you been) in a Clinical Trial?
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Frisky, glad today was a bit better. You should definitely put yourself first and don't take a dose if your body or gut is telling you it would not be right to take it. Don't feel guilty about the trial. Ciabatta rolls with Irish butter and raspberry jam sounds delicious!
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JFL You're so right! Listen to this story....you're going to love this one
I took the medication last night out of guilt, didn't really wanted to do it and lose myself again.
This morning I woke up late and discombobulated, I was having such a hard time getting up and functioning, there was no way I was going to take the next dose. Coffee and Ritalin weren't putting a dent into the think fog enveloping my brain and body.
While I waded through the viscousness of my catatonic state, It took me forever to decide on that to do, but eventually realized that I was NOT going to be able to continue on the protocol as prescribed, and that it was my duty to be honest and inform my doctors of my decision.
When I picked up the phone, I found an urgent message to call the hospital. The trial nurse told me to stop taking the medication and to go in for bloodwork tomorrow. I thanked her, and then informed her of the problems I was having and my decision to drop out of the trial. To my surprise she confirmed that many people are having problems and that Pfizer is willing to cut the medication in half! And that i was not to take it today or tomorrow!
I told her THAT was a wise decision! And that I would continue on half the dose!
So there you have it! Frisky was on to something way before this announcement was made! So happy I skipped the dose yesterday! As I predicted the outcome of this trial can't be good because the premises are all wrong to start with, but lacking any other viable alternatives, I'm willing to give them the benefit of the doubt...
Needless to say, I'm so relieved this nightmare is finally over and I will be able to soon get back to my real self again. No more body snatchers episodes.
To celebrate and commemorate this event, I will now try to go on a long bike ride!
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Great Frisky !!!! You had me worried. So... do you continue in the trial with the lowered dose?? Or stop med altogether and go another route??
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i would continue on half the dose and see how I feel...the fact that they made the decision to stop this nonsense, reassures me that there’s some dignity left...they might not have their heads so far stuck up their asses, as I thought....
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Frisky,what a huge relief! They obviously had to scramble to save their trial, too many patients threatening to walk.
I just read an interview with the head of Pfizer, and he talked about your drug as one of their new areas of development, called it a CDK2/4/6 inhibitor, and saying we need something to take after Ibrance (duh!, but at least he is doing something about it). That they are now talking about it to the press means they have some confidence that it will be here to stay. He also said they have developed an injectable checkpoint inhibitor (I had not realized that the existing immunotherapy is given by IV, but of course), and that they are assessing whether it can be given as a shot every six weeks instead of every four weeks. So, progress, we move onwards!!
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Cureious....this is all well and good, the problem as I see it, is that they set the bar so low, how can they miss? When it takes three months to diagnose progression?
Have you noticed how all our medications seems to work only for three months at the time?
They recently found a 2cm lesion in my liver, thatmeans that all the medications taken since I was diagnosed didn't really work and the pet and MRI scans were useless! Unscientific!
Isn't consistency in results what distinguishes SCIENCE from QUACKERY? And since we are all different and respond differently why not treat us individually?
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Frisky, I'm not sure what you mean, but you may have been the straw that broke the camels back here, you and those before you forcing them to drop to the half level. The big question is what this drug is doing to the cancer, for which you wait for scans, but also what's going on with your ANC and other blood markers? There must be some indications in the bloodwork that come with all these side effects, and their decision may have come from looking at the bloodwork across the spectrum of patients as well.
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I AM SO HAPPY TO HEAR THAT FRISKY!!! WHEW!!!
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That's exactly right Indomitable Cureious! ANC dropping to dangerous levels is a stated factor...
my question is: if I—Just a patient—knew and warn them, two days into the protocol, that the side effects were unbearable and that I needed my pill count lowered...why didn't the expert know already?
The only explanation is that they had to increase the dose, in a desperate effort to save the day, it was an Hail Mary pass, because the results at the lower doses had to have been disappointing.
Now, I could be wrong, but experience has taught me that, like Judge Judy, my brain power on a really bad day far exceed that of the best and the brightest on their best day...
I don't take any credit for this gift....it's just the natural consequence of having had to learn to survive and become self reliant in the un-hospitable environment of my mother's womb....
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hi frisky! I can completely relate to that deadening feeling - when I started getting all the medications in the beginning, I was totally deadened too. That is such an interesting observation on the psychological aspect of these meds.
I’m glad you’re feeling back to yourself and able to mentally process your plan of action for the next set of dosings. That is really important sounding.
I often worry about sugar and fat feeding cancer cells but when I deprive myself of these things, I feel really bad and then when I eat them, I feel amazing. I have wondered if it’s like the cancer spirit saying “feed me feed me!!” But then my rational brain wants to believe that no, I actually need these nutrients and my body needs them and this is why I feel so much better after I eat them. I am a pro-fats and pro-glucose gal. Not in excess but I do believe that most people function very well with these macronutrients. Some can live well on the keto diet but I have tried and really am aware of how’s my body and brain need fats and carbs.
It’s been an interesting journey trying to mentally allow myself to have these things in my diet and not feel fear of feeding the cancer.
Love reading your posts!! Hoping that the next round is easier on you!!
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thank you lovefromphilly....I agree with you....plus my first oncologist, MD Nicholas Gonzales, told me I could eat everything but not meat of any sort, fish once in a while, and all the fruits and vegetables I wanted.
I'm predisposed to diabetes, which I believe is a negative factor in fighting MBC, so I have to curb the simple carbs, but I enjoy all the berries.
Breads, my favorite food group, are now only a treat....
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yes Kattysmith! They are coming to their senses and so am I. thank you for being there for me throughout this weekly drama!
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Glad to hear they're cutting down the dose, Frisky! So sorry you had to endure all of that. I hope the reduced dose works for you
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Thank you Ann! I think it will work!
Will it be enough to stop cancer cells from growing?
That's TBD...but I do hope so for my own benefit, and the benefit of everyone else that's afflicted by this dreadful disease
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Fingers crossed for its efficacy on beating down the cancer cells. I'm a big believer in dose adjustments and we need to balance our quality of life with efficacy. I almost gave up on drugs when I took them at recommended doses and am glad to say adjusting dosages saved my life. I know doctor's want to do the best by us when it comes to beating down the disease, but what use is it if it wants to make us quit and live like zombies?
Best,
Ann
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Frisky I am so pleased for you that they have reduced the dose. You went through so much and for that I am sure we are all very grateful but sad to know that one of us is suffering particularly when a lower dose may be just as helpful. I was also on a Pfizer trial which in 2016 was the only way for me to access Ibrance in the UK. I hated all the scanning and blood draws but at least the dosing had been sorted out.
Kattysmith I am also hoping that things are going well for you as your trial sounds very exciting for us ER+ Her- people.
LoveFromPhilly I am a vegetarian but I love carbs and sugar. My glucose levels are low normal but I wonder if by taking metformin I can cheat and then continue my bad carb/sugar habits. I do realise that I should cut back but I am loving and enjoying life and much as I want more years they have to been fun years.
Good luck everyone and thank you all who do the trials for the rest of us.
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Frisky- so glad they cut the dose in half- still a disturbing scenario. I echo your comment about a lot of drugs having a PFS of 4 months- about how long it takes to get the first PET back showing you have a progression. How do you differentiate that from someone it didn’t work in at all?
I am on AA- a very doable drug for me ( probably not for a diabetic however) I don’t know if it is working yet- first PET in 3 weeks. It is supposed to have a PFS of 7 months- when I mentioned this to the UCSF specialist she said “wouldn’t that be fantastic if you got 7 months?” and I thought -Gee- I have higher hopes than that for a treatment.
Anyway- very interested in your experience with this combo and you continued well being.
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Oh, what a beautiful mornin', without the SE of the Pfizer medication.....
Oh, what a beautiful day, I'm smiling as I sip my coffee with all my mental faculties intact....
I've got a beautiful feeling, as I prepare to get my bloodwork checked
Everything's going my way.Well Folks...it's true! Getting off this drug makes a huge difference in quality of life. I had forgotten what it felt like waking up early, without any mental fog, ready to live and enjoy every moment!
I want to thank you all, and NKB, Ann, Chico for your comments of understanding and support!
Yes folks....knowing that the SE from this medication are extremely dangerous, the hospital is doing a check up 48 hours after the last dose was taken....they had scheduled me at the end of the day—when the results would have further normalized— I told them I was available only first thing in the morning, as I was leaving for the weekend.
The question is why?
Why check the blood long after the dangerous repercussions of the medication would have already left my body? What good does it do me? Who benefits from these manipulations? The answer is obvious
Why their immense chagrin, when a few days ago, I went for a check up, AFTER I had taken the morning dose? Why the desperation in the technician face, as she tried desperately to come up with acceptable results, and the consultation with the nurse on how to deal with the unpleasant results.
Obviously, It was because they knew that the EKG and the other tests they were running would have shown unacceptable numbers. Damaging results that they didn't want to include in their records....
So, pay attention, those of you, thinking of joining a clinical trial...the game is rigged to prove that the drug has less damaging side effects than it does....and its only when patients threaten to walk out that they pay attention.
We have to learn to ask difficult questions in order to protect ourselves. Our doctors and hospitals work exclusively for the economic benefit and growth of the pharmaceutical companies. We are disposable carnage, and a perennial reminder of their immense incompetence....
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Frisky, is the corn as high as an elephant's eye? >winky face< Have a great weekend!
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you too Kattysmith! Enjoy the weekend
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Frisky..thank goodness you stopped this dose. I am assuming you are Phase 1 of this trial where dosing is the typical procedure?
Did they start everyone at this dose or just a subset or arm that experimented with your limits? Geez..this was tough just to read what you were writing.
Thank you for bringing us into the reality that the dosing phase can be horrific for our "human carnage" sisters (and brothers).
Be safe, my BCO friend and I really want this lowered dose to work for you. Enjoy your coffee and get your day back. Keep writing.
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Sandybeach, they have been escalating the dose.
The question is why?
If the previous amounts had shown promising results?
The only logical answer—that I could come up with—is that the lower doses didn't prove to be any good. I could, of course, be totally wrong...time will tell. So now, according to my doctors, we're going back to the previous dose, which would be half of what I was taking
Plato, through Socrates, insisted that there's no free lunch...that the soul always knows what we're doing and that the price is that we have to live with ourselves. We can only imagine the hell our president, for example, experiences every moment while awake or asleep...
Here's some interesting facts regarding the toll all these crooked games and manipulations, play on the mind of our poor doctors.
The psychology of oncology: Physician burnout is going unrecognized
Oncologists need to be aware of signs of burnout and make efforts to prevent it.
HemOnc Today, June 10, 2008
Approximately one-third of practicing oncologists experience a significant career burnout, according to data from a collection of studies.
Burnout is a "syndrome of emotional exhaustion, depersonalization and a sense of low personal accomplishment that leads to decreased effectiveness at work," according to Tait Shanafelt, MD, and colleagues. The symptoms of burnout often go unrecognized and can be similar to those of depression and stress.
Physicians Experience Highest Suicide Rate of Any Profession
Pauline Anderson
May 07, 2018
NEW YORK — With one completed suicide every day, US physicians have the highest suicide rate of any profession. In addition, the number of physician suicides is more than twice that of the general population, new research shows.
A systematic literature review of physician suicide shows that the suicide rate among physicians is 28 to 40 per 100,000, more than double that in the general population.
ASCO POST
Recognizing and Managing Physician Burnout in Oncology
A new ASCO survey attempts to understand why physicians experience burnout more often than other professionals.
An estimated 300 to 400 doctors kill themselves each year, a rate of 28 to 40 per 100,000 or more than double that of general population. That is according to a review of 10 years of literature on the subject presented at the American Psychiatry Association annual meeting in May.Jul 31, 2018
Science News from research organizations
More than 70% of young oncologists in Europe suffer symptoms of burnout
- Date: September 26, 2014
- Source:European Society for Medical Oncology (ESMO)
- Summary:
- Across Europe, more than 70% of young cancer specialists are showing signs of burnout, the largest survey of its kind has revealed. The results have prompted calls for serious action to address the issue at all levels. Burnout could lead to serious personal consequences for the doctor such as anxiety, depression, alcohol or substance abuse and suicide, researchers warned.
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I guess, after a while, they can't live with themselves...it's an incredible sad situation for them and for us!
Let us pray for a miracle, for a return to sanity....let's be compassionate toward our doctors and nurses that have to live with the current status quo, where shareholders profits are valued more than human lives....our lives.
1600 cancer patients die in the USA every day....
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check out this amazing lecture by Bruce Lipton—whom I consider a great mind—and the power we have to heal ourselves once we understand how our minds control our environment.. Just sheer genius!
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Frisky, I'm thrilled that your trial drug dose will be reduced! I'm so sorry that you had to endure difficult SEs. My understanding is that dosing trials have a preset plan for increasing dosages until unacceptable side effects occur. So, it may not be the case that the half-dose of the drug was not effective. Many approved drugs (Xeloda, Affinitor) are effective in lower doses than the standard of care dose. I hope and pray that you will be rewarded for your bravery with excellent results on super-Ibrance!
Very best wishes! Theresa
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Frisky-
My onc, who is also researcher and PI for a number of clinical trials, says that she thinks the MTD dose approach to trials frequently does a disservice to patients AND the medication-- often lower doses can be and ARE effective, with less intense/fewer side effects, but that pharmaceutical companies want to maximize the number of patients for whom the medication might be effective, and try to push the dose up and up. In her clinical practice she will consider starting with a lower than 'recommended' dose, or be quick to lower a dose for untoward side effects. She knows that no medication is useful if patients can't tolerate it. Or if it does too much collateral damage to major organs.
I am happy that Pfizer came to their senses and lower the dose. I also agree that just because the had escalated the dose does not mean that it ws not effective at a lower dose-- I'm glad that they are willing to continue the trial with the original dosing regimen. I hope that it makes this more tolerable for you and the other participants, and I hope it is very effective. CDK2i, in theory and pre-clinical modeling, should be a good treatment approach. I am very curious to see the outcome of this trial.
Thanks for participating, and for keeping us updated! Looking forward to hearing how your fare over the next weeks...
Elizabeth
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Elisabeth and Theresa...thank you for your support, for sharing you knowledge and feelings about dose efficacy.
Yesterday I was given the go ahead to proceed with the half dose, I did last night, and this morning although at first thought that it might work, I soon discovered that the symptoms although slightly diminished, were all there.
I was unable to pack, and found myself going from room to room unable to concentrate on what I was doing. I had eaten a green salad at 7.00 pm the night before...well it all came up 12 hours later...not a good sign...
I was so sick and absent minded, there was no way I was going to take the other pill while driving up and down the Taconic Parkway on my way to a weekend gateway, so I didn't take it and I'm not sure when I'll be ready to try again.
Maybe on Monday morning.....25mg is obviously still too much medication for this body...I wish I had better news...
Enjoy the weekend everyone
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Frisky-
UGH-- but I am wondering if they gave your body sufficient time to degrade the drugs you already had in your system-- not sure what the half-life of it is, but Ibrance has a 30 hour half-life-- I imagine you would need a few days to get the (already too high) blood concentration back into a desirable range. If I were you, I would wait until Monday and start the reduced dose regimen....
Hope the ickiness passes quickly and you have a wonderful weekend away.
Elizabeth
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I totally agree Elizabeth....i need to clear my system...the two doses definitely overlap too much,
Maybe it should be taken every 18 hours....I’m going to give it another try on Monday...
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Frisky, I'm so sorry to hear that your weekend plans were scuttled and that you are still feeling so poorly. I agree with the above suggestions and your intuition that the previous over-doses haven't had adequate time to clear your system. Hoping you find some balance ASAP.
Peace and rest today,
Katty
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Frisky, I'm so sorry that the lower dose resulted in side effects! I agree with Elizabeth, Katty and YOU... I would wait until Monday to take another dose. On Monday, you'll have access to your oncologist or her staff if you experience side effects.
Ladies, I'm struggling with a tough decision and need input. I recently progressed on Xeloda and had my first liver lesion appear on PET/CT (1.7cm SUV 9.6). My liver was clear on PET/CT 3 months ago. My oncologist suggested a Phase 1 oral SERD trial (G1T48). Other options were Affinitor/Aromasin or Alpelisib/Faslodex. I have an ESR1 mutation and have progressed on tamoxifen, letrozole and Faslodex/Ibrance. I told my oncologist that I wanted local liver treatment, so she referred me to an interventional radiologist and liver surgeon. I chose the oral SERD and took one dose last Tuesday and did blood draws all day. I'm scheduled to start daily treatment this Friday. I met with the liver surgeon on Friday. A liver MRI showed only the single lesion at the edge of the liver which is "easily resectable." The surgeon will be gone for 4 weeks, so kindly offered to fit me in tomorrow (Monday). We were thrilled! Then my trial coordinator said my oncologist advises against surgery because I may/will be eliminated from the trial. I asked before going on the trial whether liver biopsy/resection was allowed and was told yes by trial coordinator (oncologist was at ASCO). Now trial coordinator says can't have liver resection within 14 days of starting trial. The surgeon's scheduled is extremely booked when he returns in mid-July. I LOVE my oncologist and don't want to go against her recommendation or hurt her trial, but I'm terrified that by July I will no longer be eligible for liver resection due to progression. Should I postpone the surgery with the hopes of rescheduling in July? Any thoughts? Thanks! Theresa
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