Clinical Trial - LSZ102 with Ribociclib

AnimalCrackers
AnimalCrackers Member Posts: 701
edited November 2017 in Stage IV/Metastatic Breast Cancer ONLY

I am participating in a clinical
trial out of the Termeer Center for Targeted Therapies at Massachusetts General Hospital (MGH) in Boston and wanted to chronicle and share my experience here on BCO.  I begin the trial on Thursday 5/18/17.  Novartis is supporting the research study by providing the drugs and study funding.

I was diagnosed with de novo
metastatic breast cancer, also known as Stage IV breast cancer, in June of 2014.
The metastases were to my bones. I was 52 and post menopause.  I am just a month shy of 3 years out from
diagnosis and the cancer has progressed to my liver.  My last treatment protocol was Ibrance with Letrozole.  I was on it for 16 cycles but the spot on my liver first appeared as indeterminate (5-7mm) in a scan and MRI in January 2017, which was cycle 12 or 13.  My April scans and MRI showed the lesion to have nearly doubled in size (1.3cm).  Technically I'd say Ibrance\Letrozole failed after 12 months.  I found that protocol to be very tolerable.  Unfortunately it didn't keep me progression free. So onward we go...

Here are some details about the
trial/study.

ClinicalTrials.gov Identifier: NCT02734615

Official Title:

A Phase I/Ib, Open Label
Study of LSZ102 Single Agent and LSZ102 in Combination With Either LEE011
(LSZ102 + LEE011) or BYL719 (LSZ102 + BYL719) in Patients With Advanced or
Metastatic ER+ Breast Cancer Who Have Progressed After Endocrine Therapy

Interventions\Protocol
· 
LSZ102 is a SERD (Selective Estrogen Receptor
Degrader) that blocks and destroys estrogen receptors.  At this time, I have not been given a name
for this drug. This SERD is in pill form. 
It is not an injection.  Those of
you on Faslodex will be happy to hear that. 
This drug is not approved by the FDA and this is the first time LSZ102
will be studied in humans.

· 
LEE011 is also known by its generic name
ribociclib or by its brand name Kisqali. 
It is a CDK 4/6 inhibitor (similar to palbociclib/Ibrance).  This drug is FDA approved (I believe as of
March 2017).

· 
BYL719 belongs to a group of medicines called PI3K
inhibitors. I believe the generic name
is alpelisib.  I don’t know the
FDA approval status of this drug.  I won’t
be taking this drug in the trial.

Purpose of the Study:

To characterize the safety and tolerability, identify recommended doses and
regimens for future studies, pharmacokinetics (PK), pharmacodynamics (PD) and
anti-tumor activity of LSZ102 as a single agent and in combination with either
LEE011 or BYL719 in adult patients with locally advanced or metastatic ER+
breast cancer who have progressed after endocrine therapy.

Simply put - the reason for the
study is to learn whether LSZ102 alone or when added to either LEE011 or BYL719
is safe and whether it helps to shrink breast tumors in people who have locally
advanced or metastatic (ER+) breast cancer and have progressed after hormonal
therapy (in my case letrozole/Femara).

Dosage Information
This paragraph is almost verbatim
from my consent form: “Since this study is looking for the highest dose of
LSZ102 that can be administered safely without severe or unmanageable side
effects, not everyone who participates in this research study will receive the
same dose of the study drug.  The dose [I]
get will depend on the number of participants who have been enrolled in the
study before [me] and how well they have tolerated their doses.”

My participation will be with the
LSZ102 and LEE011 (Ribociclib/Kisqali). 
I will NOT be taking BYL719 (P13K inhibitor).

Screening for Eligibility

Before you
begin a trial you have to go through a series of screening tests and
procedures to ensure that you are eligible to participate in the study.  This
trial had the following screening tests/procedures:

Echocardiogram
EKGs (electrocardiogram)
Extensive Blood Tests (6 vials of blood)
Guardant liquid biopsy
Tumor biopsy (in my case they biopsied the new liver lesion not the original breast tumor)

Wash-Out Period
I wanted to note that there is a "wash-out" period of at least two weeks where you are off all treatment.  During this time I did start to feel more bone pain in my hips and I had a couple of nasty hot flashes but that was it. 

Please feel free to ask me any questions.  I will do my best to answer them and will pick the brains of my doctors to find out what I don't know. I will update the topic as often and thoroughly as I can.  I hope it will help everyone to have a peek into this study.  Wish me luck.


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Comments

  • JFL
    JFL Member Posts: 1,947
    edited May 2017

    Thanks for posting, Cathy! This sounds interesting - with three new drugs being tested. I have heard there is a lot of promise in the SERDs (I read that a few drug companies are developing/testing these). The PI3K drug sounds like it may really help heavily pretreated patients, which is wonderful. I have the PI3K mutation so I am very interested in how this drug pans out. And more studying of ribociclib is good too. I would like to know if it will work in people who have failed Ibrance. Good luck and keep us posted.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2017

    Sorry for being ignorant, but where are you participating in the trial?

    I am thrilled that more SERDs are coming down the pipeline!

    Jennifer

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited May 2017

    Hi blainejennifer,

    That's a good question.  I neglected to include that in my post.  My bad.  The trial is out of the Termeer Center for Targeted Therapies at Massachusetts General Hospital (MGH) in Boston.  I believe that Sloan Kettering may also be involved in this study.  I will update my top level post.

    Thanks!

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited May 2017



    Monitoring for Side Effects:

    Participating in a clinical trial involves a lot of monitoring which is good
    because we are dealing with an unknown drug and unknown drug combination and we want to identify and address
    problems as soon as they arise.  In order to be monitored you need to
    spend more time "in clinic", as they call it.  In other words,
    there are more "study visits" to the hospital for various
    tests.  For this trial most of the "study visits" are
    for blood draws - to keep track of
    blood counts and organ function (kidney and liver) – and for EKGs to monitor
    your heart.  I believe this is
    because ribociclib/Kisqali “…can cause a heart problem known as QT
    prolongation. This condition can cause an abnormal heartbeat…” and LSZ102 can cause an increased heart rate.  Some visits are short for simple blood draws
    and EKGs and some are long all day events with incremental blood draws and
    EKGs.  The first 2 months are the busiest and then the visits/monitoring
    will be less.  The surveillance scans (bone scan, ct scans) are performed
    more frequently than when not on a trial.  For this trial they will be
    every 2 months instead of every 4 months. 

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited May 2017

    Cycle 1/Day 1 – May 18
    I arrived at Mass General hospital (technically the Yawkey
    Building) at 7:10am for my 7:30am appt. 
    I live about 26 miles North of Boston. 
    When there is no traffic I can get there in 40 minutes.  In rush hour it could take 90 minutes to 2
    hrs.  This was rush hour but my husband
    drove me and we took advantage of the HOV lane and we left at 6:00am.  So 1 hr 10 minutes was pretty good and I was
    early!  Left to my own devices I am NEVER
    early.  Love my husband!

    I didn’t have to fast overnight but could not have anything
    to eat or drink 2 hrs prior to administration of the drugs.  I had not eaten since 9:30pm the night
    before.

    6 Vials of blood were drawn

    Vital signs taken (blood pressure taken 3 times - 2 minutes
    apart, temperature, pulse, oxygen, weight)

    Took the elevator down to the Termeer Center for Targeted
    Therapies where the clinical trials are held. 
    Nice facility.  Had my own room
    with a nice hospital recliner, a TV and a window.

    IV inserted for the incremental blood draws for the rest of
    the day

    Wait for blood results

    Wait for pharmacy to prepare the drugs

    3 sets of EKGs (2 minutes apart)

    Blood drawn (small sample in a single vial)

    11:15am – I reviewed
    the drugs and dosages with member of the trial team.  Much to my surprise I was going to be taking
    9 pills. They handed me 2 bags with 9
    bottles of the drugs.  The bottles were
    for the different dosages for the two drugs for the month - not for 9 different pills.  The LSZ102
    needs to be refrigerated.

    I was given a Drug Diary with dosing instructions for each
    of the drugs and a Dosing Log for Cycle 1. 
    Each cycle is 28 days.  The Dosing
    Log is where I record the date and time I take the medications, the number of
    tablets/capsules I take for each dose, and indicate if I lost any pills due to
    vomiting or dropping them.

    · 
    ribociclib – 300mg - 3 capsules (One 200mg and
    two 50mg)

    21 days on 7 days off

    · 
    LSZ102 – 400mg - 6 tablets (four 25mg and two
    150mg)
    28 days continuous

    11:30am - I swallowed my first dose for this new protocol with an 8
    ounce bottle of water.  Now I had to wait
    1 hour before I could eat.  Keep in mind
    I hadn’t eaten since 9:30pm the previous night so I was counting the minutes. As it turns out I didn’t get to get anything
    to eat until after 1:00pm.

      
    Note:  during
    the trial this protocol is to be taken on an empty stomach.  You can either eat and wait 2 hours before
    taking the pills or take the pills and wait 1 hour before you eat.  I am opting to take the pills and wait an hour before I eat.

    The remainder of the day entailed sitting around waiting for
    6 incremental blood draws and EKGs (always in a set of 3 2 minutes apart).  The time
    intervals were 30 minutes, then 1 hr, then every 2 hrs.  The word post in the parentheses below means
    since the dosage time 11:30am.

    · 
    12:00pm (30 min post)
    · 
    12:30pm (1 hr post)
    · 
    1:30pm (2 hrs post)
    · 
    3:30pm (4 hrs post)
    · 
    5:30pm (6 hrs post)
    · 
    7:30pm (8 hrs post)

    It wasn’t a bad day at all. Just a long day.  Almost 12.5 hrs.  I kept
    myself occupied reading and doing crossword puzzles.  There was a TV in the room but I didn’t
    bother with it.  It was nice to sit in
    relative quiet for a change.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited May 2017

    Cycle 1/Day 2 – May 19
    Easy day.  Just blood
    draw (small sample in a single vial) and the triplicate EKGs.

    I was told on Day 1 of the trial (May 18) that I was not to
    take my next dose until I met with the Trial team member on May 19.  I had to bring ALL 9 bottles back to the clinic.  The LSZ102 has to be refrigerated so I had to
    use cold packs to keep it cool.  I will have to do this every time I have a study visit with Labs/EKGs.  I will be
    buying a little cooler for the future.  We
    reviewed the doses, I took the pills and recorded it in the Dosing Log.   

    Next study visit is Day 8, May 25.  Same as this one.  Blood draw and triplicate EKGs.

    On June 1 (Day 15 of the cycle) I will have another biopsy
    on my liver.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited May 2017

    Cycle 1/Day 7
    - May 24
    It has been 1 week since I started the trial and new protocol.  So far so good.  No side effects to report yet.


    I go back to the clinic tomorrow for Labs/EKGs.  I haven't purchased a cooler yet for my drugs.  Better run out now and get one..

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited May 2017

    Thank Cathy for the updates. Thats great that you arent noticing any se.

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2017

    Following. Thank you Cathy. This is going to help many people.

    >Z<

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited May 2017

    Thanks so much for sharing. This is great. I have been on a PARP trial for a year and should have done the same. I was just in really bad shape when I started it and the trial is now being redesigned- i'm still getting the drug- so nothing to be offered at the moment. All the very best of luck to you!!!


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  • artistatheart
    artistatheart Member Posts: 2,176
    edited May 2017

    Cathy, I admire your courage at trying an unknown trial. I would find it scary and disconcerting. I know that is with every new med but unknown ones is very brave. Thank you and best of luck. We all hope this works wonders! I'll be following!

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2017

    Artistatheart:Thanks. I will be following.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2017

    AnimalCrackers: Thanks. Following.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited May 2017


    Cycle1/Day 8 – May
    25

    Yucky rainy day in Boston.  Lots of
    traffic and I was running late as usual.  Supposed to be at the appointment by 10:30am.  Got there at 10:50am. 

    Today is a study visit so I have to bring ALL 9 bottles of
    pills to the clinic and wait to take my next dose until the blood work is
    complete.  I will have to remember to ask
    them exactly what they are looking at to determine that I can continue with the
    dose. Every study visit requires that I
    bring all 9 bottles including the empty ones and the ones that have not been
    opened yet. I haven’t had any empty ones
    yet but I will at the next study visit and they will take the empty bottles at
    that time.

    · 
    Note:  It helps to mark the caps of the bottles that
    are open and being used with a line.  When
    you have so many bottles it easier to grab the ones that are marked and
    administer from them.  When the bottles
    are empty mark the cap of the bottle with another line to make an X to indicate
    that it is empty.

    Vital signs (blood pressure in triplicate, temperature,
    pulse, oxygen, weight)

    Labs – 7 vials of blood

    EKGs (triplicate 2 minutes apart)

    Wait for blood work.

    Discuss any side effects with trial team member.  So far no side effects for me to report.  But it has only been a week.

    Took my next dose (have to wait an hour before I can eat).

    Updated my Dosing Log with the nurse from the trial team.  She was a little confused by my capsule and
    tablet counts.  Good thing I knew what I
    was taking.  But then again she deals
    with so many different trials and drug doses I can’t really fault her for a
    momentary brain fart.


    It was a long yucky drive home in the rain.  Got home around 2:00pm. 
    Had a bagel and tea.  Was supposed
    to get online to work but just couldn’t get my head into it.  Spent the rest of the day on the internet
    reading and watching youtube videos. 
    Just let myself get lost on the internet eating Hershey Kisses.  Hubby had to work late so I went out to get
    myself some dinner (just a salad with grilled chicken and sweet potato fries).  I don’t eat all the fries.  Just a few. 
    I have noticed a slight change in my sense of taste.  I can’t quite describe it yet.  It’s not terrible – just different.  Perhaps a little metallic.

    Next Thursday (June 1) is my next study visit and my second (and hopefully last for a while anyway) liver biopsy.

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  • Husband11
    Husband11 Member Posts: 2,264
    edited May 2017

    Thank you for posting this and all the details. I really hope you have been given the opportunity to the first to receive a treatment that will benefit many.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited May 2017

    Cathy, You and all the patients who enroll in clinical trials and put your bodies directly in what is (the possibility of) harm's way are my hero(es). Thanks for all of the information, this is the type of information that I would hope to read about for all of the potentially game-changing clinical trials. I hope if any nurses or doctors tell you what they are finding in the way of benefits or side effects you can pass them along, with everyone understanding of course its just a few patients and may not be statistically representative of the results, which is why we do trials anyway. Thank you, will be reading along with great interest!!

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2017

    Hugs Animal Crackers.

    Listening and praying for awesome results. IMO, all cancer treatments are an experiment, except that we KNOW the approved drugs don't work*. This is why I am more enthusiastic than others about trials.

    I think you are doing the smart thing yourself. But I also think you are a hero.

    >Z<

    * I don't consider a 3 months improvement in PFS "working".

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited May 2017

    Cathy i wish you the best, thanks so much for all the info.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited June 2017

    Cycle1/Day 15 – June 1

    I had my second liver biopsy as part of the protocol for this trial on June 1.  This time everything went very smoothly.  Yay!  I'm just a little tired still after 3 days.

    I've finished my 2nd week on the drug combination LSZ102 and Ribociclib (LEE011) with no major side effects so far.  No diarrhea which was my biggest concern.  Actually I'd have to say I'm a little constipated.  But I'm used to that.  My stomach is a little upset but not to the point that I would characterize it as nausea.  I'd say I am feeling better than I did on Ibrance\Letrozole but it is still early.  We'll see if I'm singing the same tune in another month or so.

    My blood work is good.  The only thing that seems to be on their radar is my kidney function numbers are below what they should be but that is one of the side effects they are expecting.  These numbers are part of the comprehensive metabolic panel under the component called EGFR (Estimated Glomerular filtration rate).  Glomeruli are tiny filters in the kidneys that filter waste from the blood.  So the EGFR test estimates how much blood passes through the glomeruli each minute.  Normal range is greater than 60 (>60 mL/min/1.73m2) and my numbers are in the 50's now.  This number is calculated from the Creatinine test and my Creatinine number is in normal range. I'm drinking a lot of water (which is hard for me but I'm trying) and my output is good. I will do more research on what this really means and ask my MO next Wednesday when I see him.   The rest of my blood work is very good.  My WBC and Neutrophils are in normal range.  We'll see if they dip next week which will be the end of week three on Ribo.

    They call me their star patient.  I said I'm only a star patient if this stuff actually works!  It's no good to me if I tolerate it well but still progress.

    Next Wednesday (June 7) I go in for a full day study visit like I had on May 18 (C1/D1) where I will have incremental blood draws and EKGs throughout the day. 

    So far so good.  Pretty mundane.  Let's hope it stays that way and my next scans show stability at the very least!  But that's not for another month or so.

    Oh I just thought of one other thing - I am getting a little tired of being a human pin cushion.  My veins are not very cooperative sometimes so I often have to get stuck more than once.  I don't think I'm ready for a port (at least not mentally) but we'll see.

    I've been  keeping up with everyone on the other threads.  I think it has been a bit downcast lately.  Let's hope that it's just a blip and more people will be reporting good news soon.  We often don't hear much from those who are doing well because they feel bad reporting happy news.  I know I felt that way at one point.  But it is important that good news be shared!  I'm preaching to the choir, I know.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2017

    Wow thanks so much from all of us Cathy! Sounds like a lot of traveling and hurry up and wait. Hard to do. Stability at the very least for sure!

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  • pajim
    pajim Member Posts: 2,785
    edited June 2017

    Cathy, I've been looking into this trial (I live across the river from the MGH so at least not much of a commute). I really appreciate your commenting on the requirements and side-effects.

    PKs are so much fun, aren't they?

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  • zarovka
    zarovka Member Posts: 3,607
    edited June 2017

    AnimalCrackers - It is very interesting to understand exactly how much work it is to be in a trial, and what you go through. I admire you for doing this. As you know I think it is the right decision for YOU, but not the easy road. You are getting well monitored by the best of the best, just one of the upsides of this trial.

    Keep the updates coming.

    >Z<

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited June 2017

    Cycle1/Day 21 – June 7

    I am now 3 weeks into the study.  June 7 was the last day of Kisqali/Ribociclib for Cycle 1.  I'm off that one for a week but I continue on with the LSZ102.

    It was a full day at the hospital.  The same deal as Day 1 of the Cycle.  The day began at 8:00am and ended up finishing by 5:10pm.  I spent the day getting interval blood draws or PKs as they are called and triplicate EKGs.  The first draw and EKGs are prior to dosing and then the rest are spaced out from the time of dosing:  30 min, 1 hour, then every 2 hours.  I think there were a total of 7 draws.

    They put in an IV for the draws but my veins were not cooperating again.  They finally got one in but the poor nurse was sweating it out. I feel bad for them. I know they don't want to hurt me and I can only imagine how difficult it is to poke a rolly vein and try to advance the needle.  They keep telling me I have tiny veins. 

    It was interesting to me that this time there were no labs (Complete Blood Panel and Differential).  I was curious to see my white blood cell count and neutrophil numbers on the last day of the Ribo cycle but I won't get that info this time around.  I guess they aren't as concerned about those counts on this protocol.  I was also interested in my EGFR which a kidney function number.  The last two labs showed it below 60 which could mean my kidneys are not functioning properly.  I will get labs next week.

    So I won't have another study visit like this one.  The interval blood draws (PKs) are done to follow the level of the drug in my system throughout the day to help determine if the dose I am getting fades out or maintains a certain level.  What that level is I don't know.  One of the things I don't like about being in the study is that I don't see the doctor.  I really miss interacting with the doctor and asking questions.  The nurses and trial study team members are all very nice but I can't get information from them.  I will see the doctor next week so it will be interesting to see how much time he spends with me and if I am able to ask him questions. 

    I don't have the results back yet from the second liver biopsy that I had done last week.  That's one of the questions I want to ask the doctor - why was there a second liver biopsy and why so soon after starting the treatment.

    In terms of how I am feeling - the side effects that I have to report right now are (and not in any particular order of significance):

    -- constipation - par for the course I guess but better than diarrhea
    -- stomach upset - a little nausea and some burning but no vomiting
    -- fatigue - I am feeling more tired (lethargic) on this protocol than I did on Ibrance/Letrozole.  
    -- vaginal discharge - it's not a lot but it is there. It does not itch or burn so that's good.  I can't tell if it has an odor because I have an extremely poor sense of smell.
    -- altered sense of taste - this one is hard to describe other than to say that things taste different than they did.  I get an aftertaste of some sort and I feel a little sick after I eat - as if the food was too rich. Hey maybe I'll lose a few pounds!
    -- hair loss stabilizing - I'm not sure yet but it appears that my hair thinning has abated.  My hair was thinning quite a bit on Ibrance/Letrozole but I'm noticing far less shedding in the shower and during the day.  I hope that trend continues.
    -- tumor softening - my breast tumor is at 10:00 so I can see it and feel it which of course I do every day.  It feels squishier which is good.

    Again - nothing particularly exciting happening yet.  I am scheduled for my next set of surveillance scans on July 11.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited June 2017

    Cycle1/Day 22 – June 8

    Just a follow up visit for additional blood draw (PK) and EKG and meet with the trial study nurse to review side effects. 

    First day of the off week for Kisqali\Ribociclib.  I'm interested to see if my stomach upset is better while not on the Ribo. 

    June 8 is my birthday.  I am 55.  The picture below was taken 3 years ago on my birthday when I was still blissfully unaware that I had cancer.

    I found the lump in my left breast the next day.


    image

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  • JFL
    JFL Member Posts: 1,947
    edited June 2017

    Happy Birthday! I hope it was nice yesterday. That pic on the boat is beautiful!

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited June 2017

    Happy Birthday, Cathy! I am following your experience, had no idea they follow the level of the drug in the blood, but of course it makes sense that they would want to know that. And you get a lot more information about how your body is responding than we normally get when issued a prescribed drug. I have terrible veins as well, for me the record was the tech giving up after six unsucessful tries, but since then I have hydrated insanely the day of the blood draw, and if possible the night before as well, for me it makes a huge difference. So when you are sitting there waiting to get poked, just keep drinking water from those little dixie cups....

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  • zarovka
    zarovka Member Posts: 3,607
    edited June 2017

    Cathy - I have to say that trials are tougher than I thought. Thank you for this. I will do a trial some day I am sure and I am learning what to expect.

    >Z<

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  • pajim
    pajim Member Posts: 2,785
    edited June 2017

    Happy Birthday! [lovely pic]. Hang in there -- I assume the visits get more spaced out as you go along.

    Sounds like the SEs/AEs aren't too bad. Really good to hear.

    Pam

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited June 2017

    Thank you all for the Birthday wishes.  It was pretty much just another day.  Especially since I had to be at the hospital for the trial.  The new normal, right?

    So last Thursday (June 8, my birthday) was the first day of my "off" week from Kisqali\Ribociclib.  I have been taking only the LSZ102 for the past 5 days and I have to report that dreaded diarrhea has reared its ugly head.  So far it isn't terrible.  It's not happening every day and when it does it is only in the morning (at least so far).  I am hoping that when I resume the Kisqali\Ribo I will go back to the constipation I was experiencing.  Now there's a sentence I never thought I'd utter.

    Update on Side Effects in general:

    -- stomach upset - but it is manageable.  I don't need to take anything to help it... yet.
    -- Bone pain - I am feeling pain in my iliac crests where I have mets.  I don't have pain in any of my other bone mets (spine, ribs, sternum, pelvis).
    -- lethargy - I don't know if that is the same as fatigue.  It's more a sense of not wanting to do much but I am able to do things if I give myself a push.
    -- change in sense of taste - food seems to taste richer and I therefor don't want to eat more
    -- appetite - I'm less hungry and feel full or sated sooner - but haven't lost any weight (I'll keep hoping)

    I'm seeing an improvement in the following areas from when I was on Ibrance\Letrozole:

    --  less hair thinning.  I hope that continues to be the case.  I'm beginning to believe the hair thinning I was experiencing on the Ibrance\Letrozole protocol was caused by the Letrozole.  Since Kisqali\Robo and Ibrance\Palbo are so close in how they work I'm inclined to put the blame on Letrozole.  But that's just my opinion.

    -- less hot flashes and I seem to be more comfortable in general with whatever temperature I'm in.  However I do get itchy in the heat (hot shower or out on the boat in the heat).  Once again I'm blaming Letrozole for the hot flashes.

    -- less achiness in joints - I didn't get achy often before but enough that I noticed it as a side effect.  mostly in my shoulder joints.  but I haven't been feeling that achiness since the change in protocol.

    My schedule looks like this for the next month:

    June 15 - Study visit:  Just a quick trip for PKs (blood draws) and EKGs and I start Cycle 2 of the protocol picking up on Ribo again.
    Week of June 17 no visits
    June 28 - Study visit
    Week of July 3 no visits
    July 11 first set of surveillance scans (bone scan, ct scans pelvis, chest, abdomen) since starting the trial on May 18.  I'm not scheduled for MRI of liver but I will ask about that.
    July 13 study visit

    Thanks to everyone who is following me on this trial.  I appreciate the support. 

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  • zarovka
    zarovka Member Posts: 3,607
    edited June 2017

    AnimalCrackers - OMG ... birthday at the hospital. Thank you for doing this. Reading closely. Thank you for doing this. I do like the improvement in side effects of Ibrance/Letrozol. I am dealing with all that stuff. Would be great if there was a better option ...

    >Z<

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