Ibrance (Palbociclib)
Comments
-
Seaway, so perfect...like they escaped from a painting on the ceiling of the Sistine Chapel! Keep having fun!
Love from PatGMc
0 -
Lucky4life;
I have been wondering about my MCV And MCH being high. It worried me but I feel better now thank you.
Cathy
0 -
About the calls from the CVS Nurse, I too got those when my Ibrance was filled through CVs specialty. I found them annoying, felt like all they wanted to know was whether there had been any changes and what my current weight was. Sometime around the 4th month of calls, I let the nurse know (very kindly) that I spend a lot of my time going to the doctor and talking to my team, and that if these calls we’re not mandatory I’d prefer to decline. She said that was no problem and they ended
0 -
so funny about the CVS calls! When I was first diagnosed de novo 2+ years ago, I was using cvs specialty pharmacy too. I was SUCH a mess emotionally and they kept calling and calling. I couldn’t figure out for the life of me why they kept calling and would ask me a million questions. I was so overwhelmed and grief-stricken and angry that I have a vague memory of finally answering and not politely telling them to stop calling me. I was sobbing and yelling. I probably scared them away!! 😂 they did leave me alone after that.
0 -
Re: Calls from the pharmacies.
When I was receiving Ibrance with Co-Pay Assistance I got the monthly calls from CVS. In all the time I've received Ibrance directly from Pfizer, guess what? No phone calls and no medical questions. I call in and request a refill, let them know what day I want it delivered and if I want to sign for it. That's it!
I wonder who collects the information you're giving. Maybe someone could ask. If you're telling the oncologist all the same stuff, isn't he/she reporting it to whoever needs to know?
Love from PatGMc
0 -
Lucky, I was wondering if the Lyrica could have some anti-cancer benefits or immune system stimulation, but I don;t see any reports of that. Are there features of your cancer that might explain such a exceptional response? I presume you have bone-only mets, but were there just a few, or slow growing (grade 1) cancer? thanks!!
0 -
Pat exactly! Your post gave me a CVS call flashback and I remember now thinking, “who are they giving this info to? I already answer all these questions repeatedly at my MOs office.” That’s probably when I finally inploded
0 -
you nailed it Pat!
0 -
I was diagnosed stage 4 "de novo" last August and started letrozole and ibrance combo right away so I have gone through at least 10 cycles of 125mg ibrance. I had a 4cm tumor in left breast with a bunch of cancerous lymph nodes auxillary to left breast and lesions in one pelvis, one vertebrae and one rib. (i had pelvic pain for months before finally finding out it was the pelvic tumor)...anyhow I have had a good response and the initial breast tumor doesn't show up on the only scan I have had since diagnosis last August (recent scan was July 17) and auxillary lymph nodes are now appearing normal in size, the pelvis and the vertebrae seem to be filling in with bone and had no uptake, the only place with uptake was the rib lesion which may have gotten slightly smaller than the initial petscan showe in early September 2018. the primary oncologist thinks getting lumpectomy of primary tumor area tissue and removing some of the past cancerous lymph nodes would be a good idea and also we decided to now treat the small rib lesion with a course of radiation instead of wait to see if it would change in more months time with the ibrance/letrozole....the radiologist oncologist thought that potentially the rib lesion cancer cells could have mutated compared to other other sites...overall we were thrilled to find out the news of the great progress and now we hope that the radiation will finish off that last known metastasis that is known to be active. Not sure how long I will be kept on ibrance post the radiation and the lumpectomy and lymph node removal? I feel fortunate that this combo seems to work for the present with my cancer type. Just positive progress for others to know about. Ibrance has been OK for me with just mostly fatigue and a little thinning of hair and eye brows but no other huge side effect other than lower blood counts.
0 -
filabrasileiro, first, let me say congratulations! What a wonderful response!
Next, to your question about how long you'll stay on Ibrance/letrozole, I would imagine you can get it for as long as you wish if there is no progression. Some folks here have stopped the drug and remain NED. I guess it just depends on what you're comfortable doing.
When I first read your words about the one remaining lesion on your rib, I immediately thought, "Radiate!" Then when I saw that the rad-onc thought the lesion might have mutated, I thought otherwise. Since you're going to have surgery anyway, why not have the small section of rib removed to check out that theory? Then you'd know from the pathology if another kind of treatment was indicated, plus you'd have the lesion out of there. I have a friend who had a metastatic lesion in one section of rib close to twenty years ago. She had it removed and it never came back in her bones.
I suppose this is way more advice than you asked for today but, hey, it's what us Dancers do!
Advice 'R' Us!
Love from PatGMc
0 -
Lucky...check your PM's
0 -
First of all, 72 months on Ibrance and Femara - WOW! Congratulations!
Secondly, I get my Ibrance from Accredo Specialty Pharmacy. Once a month, I get a text, saying my refill is available. I click on the text, which brings me to the order page. I select a delivery date, and it's here that day. I can call 24 hours a day with any questions, or to report a SE. Otherwise, they leave me alone...
Thirdly, I always wonder why the PET scan is "base of skull to mid-thigh" - though I'm sort of afraid to ask. We know the BC metastasizes to the brain, and I know tumors in feet and legs are not unheard of, so why not a full body scan? Can anyone tell me?
0 -
Lucky - thanks so much for sharing your LONG journey with Ibrance! It's wonderful to see you doing so well all these years later on your first line treatment!
Ciaci - I believe that there is too much non-cancerous 'uptake' in our brains to get a readable scan on a PET so they use MRIs for that zone. (Though that begs the question, why do they put us in that little dark room to clear our minds prior to the scan if they aren't looking at the brain?) I have heard and read repeatedly that mets below the knee are very rare, but of course they do happen so why not just scan all the way to the toes? Cost/benefit, perhaps? Good question and this is my confused partial answer. :-)
Welcome filabrasil - congratulations on your great response! I agree with Pat (which goes without saying because I always agree with Pat) that a biopsy prior to radiation might be useful for treatment considerations. In any case, standard of care is to continue the meds once you reach NEAD (no evidence of active disease) but some have chosen on their own to stop at that point and just scan.
Speaking of scan timing (earlier discussion) most do every 3 months. My MO switched me to every 6 months when I reached NED. We are stretching it out to 9 months this time and I will be scanned in Oct. (last scan was Jan and was NED.) I am fine with this, as scanixety is consuming, plus we agreed we would scan sooner if I have any symptoms.
Karen - so excited about your spa passes! That's awesome and so cool that you've been honored with that!
Seaway - so glad to see you and read of your great results. And bless you for sharing those beautiful grandbabies! SO SO cute! Enjoy every moment!
Love to all,
Lauren
0 -
Luckyforlife- I am so glad you have done so well for 5 YEARS!!!! Wow!!!! I reread your post and don't see on your profile, where is your mets? Maybe I just missed it. Is it bone only, or do you have organ mets? I have a friend with bone only and she is 7 years into this. She is only on an AI and Xgeva, not Ibrance. Why, I don't know. But I have noticed bone only mets ladies tend to fair better than organ involvement ladies.
Ciaci- I too wonder about the scans and how much they cover on our bodies. I have had 1 PET, at time of diagnosis. My insurance denied another (1 year later). My CT I get every 3 months is chest, abdomen, and pelvis so the trunk area is covered but we do not look at anything above the chest or below the hips. So brain, neck and extremities are not checked. I wonder why we cannot get at least a yearly check of the missed areas. No one has given me an answer. I think it is money. Everything is money. The less they (the insurance) has to pay out the better. My insurance is billed $7,000 for the 3 month CT test. And I know PET's and MRI's are expensive. But I do think we should have a head to toe scan at least yearly.
0 -
Candy - My MO - who would prefer PETs but they often get denied - said that’s CT + bone scan is the standard for care. You should ask your MO for a bone scan when you get your CT.
0 -
Hi Lucky,
What other medications\supplements are you taking? I think it's amazing you have been on I\F so long. Congrats to you!
Filabrasilero,
Congrats on your Good scans. It's always nice to hear good news.
Seaway,
Your grandbabies are so cute.
0 -
RE: CVS speciality pharmacy calls. They will stop calling after cycle 6. It was annoying but I also found my nurse helpful. She gave me some tips to help with some SEs that I didn't get from my MO. I didn't find this website\thread until several months after I was diagnosed.
0 -
PatGmc: what made you think that if it had mutated that radiation was not a good choice? I don't know if they have the original biopsy samples anymore to compare. I also was thinking remove the rib too but the docs seemed to not be in favor of it but I didn't press for a reason why. I have to look up which rib number it is (think 5th one) and the lesion is probably 4" away from spinal column but still on posterior side. The radiologist oncologist didn't say on his own he thinks it mutated we just asked what could be the reason the cancer is gone in other locations but not the rib, I was thinking maybe blood flow and wondered if from his experience he knew whether ribs were slower to react. I guess I need to research this more in general as to radiation choice but why the rib is still cancerous may be hard to know for sure. As far as the scan time frames, yeah I was wondering about when to get a second scan (the insurance denied petscan the second time and we got bone scan with isotopes, ct scan with contrast and MRI with contrast. (I figure all of those scans cost as much as the PETscan which they imaging told me would be $4000 if you wanted to pay cash off the street...a friend gets them in Thailand for $800, I thought about checking around in Mexico or other US locations.
0 -
Lauren- I have had 1 bone scan - fall of 2018 - 1 year after starting treatment. Kind of iffy results. Showed uptake in shoulders, elbows, wrists, clavicles, spine, hips, pelvis, knees and ankles. The thing is I have Rheumatoid Arthritis. So I think that can skew the results. I know the PET at first, and the CT's now, say osseous and sclerotic lesions in spine and pelvis labeled as metastatic disease. I will have to ask MO about when/if we will redo the bone scan. My MO seems more concerned about watching my liver met, though. She has never concentrated on the bony issues. She always focuses on the size of the liver met. I know the liver is probably more important- liver failure. But I wonder if the bone mets is stable or could be worsening. Some have posted here that one area will be stable with meds while another area may worsen. All so confusing.
0 -
I initially had three small tumors on my liver plus multiple bone mets when first dxd. They disappeared by my 9th month on Ibrance. My onc told me she questioned her decision not to biopsy the liver tumors thinking maybe they weren't mets after all, but I would rather believe the meds did their job. They have not returned. Had PET/CT yesterday so we will see. I do get a PET every three months. I think because my oncologist is located at the hospital that owns the machine they approve the scans each time (3 years now). Perhaps it is an HMO thing?
Seaway, your grandsons are adorable! I won't get to meet my newest grandson or play with the three of them for another couple of months, but here is a glimpse!
0 -
IntoLight;
Your grandchildren as so adorable. The happiness just beams off them. Are we not blessed. I love seeing Lauren's son and Pats granddaughter and all the others here.
Filabrasileiro;
What wonderful results. I am so happy for you and think your MO is right to cut and blast away....with or without a biopsy. Perhaps he's saving you the procedure if he doesnt feel it's necessary. Enjoy the relief and happiness these results must give you.
Cathy
0 -
IntoLight....your granddaughters are so cute....
In the past, I think. We have discussed green tea..maybe not so good with our medications. Does anyone have any knowledge about "Matcha". I wanted to start using as my tea to drink in the mornings...do not want to cause a problem with I/L. Curious this may be one for you to answer. Please anyone chime in with info...thanks
Sherry0 -
Sorry...grandsons...precious0
-
Fila, please forgive me for overstepping my bounds. I'm not a doctor, just a Dancer, so I shouldn't have given that kind of advice. I misunderstood and thought your rad-onc must have thought strongly that the rib had a different mutation. Please ignore what I said except for the part where I said I was happy for you!
Love from PatGMc
0 -
IntoLight / LOVE LOVE LOVE those grandbabies!! They are super cute!
Fila - I think there is merit in requesting a biopsy of the rib since it is the only non-responding met. They don't need the original samples to compare - they just need the pathology report.... but what if, for example, that one is hormone negative. It seems worthwhile knowing in case it impacts future treatment. Or what if it's not cancer at all and that's why it's not shrinking? I had my rib met biopsied and then radiated. Radiation is a great option because surgery to ribs often ends in permanent pain (that's what I was told when I asked about surgically removing it). The rib biopsy, however, was a simple procedure. In any case, your results are cause for celebration!
Love to all,
Lauren
0 -
Lauren, your post to Fila is so brilliant! I had forgotten about all the times these things showing up on scans aren't cancer at all. It brings to mind the "tumor" in my lower spine that ended up being benign while the chest wall biopsy was MBC. At that same time there was the "lesion" on my liver that, humiliatingly, was just fat (or one-too-many-Whoppers as my onc laughingly called it)! Add to that many friends' assorted spots, lesions and lumps that were biopsied and benign. (Isn't that a poetic sentence?!)
Love from PatGMc
0 -
Hi Airlinegal.. Matcha Is green tea. Although, you can buy matcha tea bags those are not the "real deal". Google matcha it's pretty interesting. Matcha is more like a powder that is wisked into hot water. Couple of years ago, I drank it daily, but it has 3 times the caffeine in it as regular. I snipped the following from the net for you....
---------
"· According to the National Cancer Institute (NCI), the catechins in matcha green tea (EGCG, EGC, ECG and EC) are so powerful that they may actually help prevent cancer, potentially making match one of the top natural cancer treatment options out there." This I credited to Dr Axe.
________________________-
The reason that I drank it was because supposeably it kills cancer stem cells. Since I had stopped all added sugar (even honey) it was difficult for me to enjoy. I did not know that I was not suppose to drink it while on Ibrance! Perhaps, that why the drug did not work for me
Haven't spoken to you for a long time! Hope things are going well for you.
hugs
0 -
Thanks all for sharing about CVS calls. I'm tired of them & hope they will stop after 6 months.
0 -
Hi Snooky how did you find out that Matcha interferes with Ibrance?? I never saw an indication of that which is scary because all they told me was grapefruit?
0 -
NicoleRed, I use this website. Type in Green Tea.
0
