Ibrance (Palbociclib)
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Tina- I scan with a CT every 3 months. Been doing that since diagnosis in Sept 2017. Had baseline PET at Stage 4 diagnosis. Wanted another PET at 1 year anniversary, but insurance denied due to CT's being "stable". Did get PET oked after slight progression of liver met in Fall of 2019, which showed no uptake. Have had 2 bone scans - Oct 2018 and Feb 2019. Next scans this upcoming Wednesday and it will be CT and bone scan---??? MO ordered another bone scan after last one was in Feb. ??? Don't know why.
I did notice my insurance approval letter this time shows next CT after this one will be no earlier than 4 months. So I guess if I am "stable" again (which I pray I am) then my insurance wants to change to every 4 months not 3 months. I have not talked to my MO about this yet, just read letter from insurance.
Long post, but there you go. Hope it helps you.
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Hi Chico!!
Actually I did see a couple:
https://meetinglibrary.asco.org/record/144866/abst...
https://meetinglibrary.asco.org/record/185195/abst...
& a more detailed story discussing the OS benefit of Ibrance:
https://www.onclive.com/conference-coverage/sabcs-...
Bottom line is "its there, but still need more time to get a clear number?"
How are you doing? What's summer like there (you're in UK?)
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Tina2— I get CT scans with contrast (chest and pelvic/abdomen) and nuclear bone scan every 3 months.
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Please forgive me for this very long and personal post. I was posting it on Facebook and thought I'd also bring it here to you friends because it's so special to me:
I only got one grandchild but, oh my, is she ever a special one!
Lainey was asked to create a painting with an accompanying narrative for a national art competition and my precious 16 year old chose to do a watercolor of me at 16, then wrote these words to go with it. I've cried and grinned and thanked God for this beautiful tribute and now she's letting me share it with you.
I decided a long time ago to nix the funeral and eulogies after I'm gone. I'm even more sure now as these words are all that matters. Oh, how I love that girl (not to mention her ability to paint that plaid skirt in watercolor)!
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"But the Master of the sea heard my despairing cry, from the waters lifted me, now safe am I. Love lifted me." The simple words of this hymn comfort a grandmother, who imagines her granddaughter singing her through another MRI. That hymn, "Love Lifted Me," has always been a comfort to Vervee, and reflects the way that she, through her love, has lifted so many.
My painting depicts Vervee, my grandmother, who is the inspiration for my pursuit of art. A four-time cancer survivor and collage artist, she has always kept a positive outlook on life and has been a blessing to thousands. It is this attitude that inspired me to create this piece.
The photograph I chose as a reference, although it is an old photo, to this day captures the true joyful and loving essence of Vervee. The artist who inspired the style of my piece is Chris Van Allsburg, a children's book illustrator. I have always been drawn to the monochromatic nature of his illustrations, and amazed at the amount of emotion he can convey using only grayscale. I hope to have captured such emotion in my painting.
Additionally, the grayscale palette of the painting contrasts the joyful expression on Vervee's face, representing how she has shown so many people, including myself, how to keep joy and love even in darkness. As the hymn says, "When nothing else could help, Love lifted me."--
Lainey Turner
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Pat, this is an amazing testament to a grandmother's love. My tears flow because of the joy she sees in you and the strength you obviously have shown. I pray my five-year-old granddaughter remembers even a little bit of my love for her once I am gone. Thank you for sharing.
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Tina - CT w/contrast every three months moving to 4 and then 6 months if still stable after a year, but I scanned in Feb after barely 2 cycles and then I am supposed to be scanning in June, however I have yet to receive my booking letter. They were already pushing people out to 4 months at the Covid start. But that doesn't matter, it takes 2-4 weeks for my scans to be read! There is a hospital here that specializes in metastatic breast cancer and I was looking to move my care over there before all this mess kicked off because I don't find these delays acceptable. I had a (2) baseline whole spine MRI and bone scan at initial workup.
Oh Pat - that is truly lovely, both the words and the painting. That's beyond sweet or heartwarming - not sure what the word would be but I can't think of it now, I gotta find the hankies.
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Hi Cure-ious thanks for the reply. I had noted that “no statistically significant OS benefit has been reported in any of the studies evaluating Palbociclib“ and was surprised as it is the CDK that has been approved and in use the longest. As always I am thinking about what’s next and am glad that my Onc here in the U.K. is running a trial for the Sanofi SERD so he will at least be familiar with that. Next scan end of June otherwise doing well and using lockdown to take back more fields in which to grow trees and add more acres to the garden .
How are you doing well I hope. I thought that you were due a scan soon?🤞🤞 Also how is your dog?
Pat what a wonderful and special thing that your granddaughter has created - what a very talented and loving girl you are very lucky.
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Pat:
What a priceless tribute! Your granddaughter is an extraordinarily gifted young woman.
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Pat, Your granddaughter is indeed very special, and as she says, you are a big influence on her. The artwork is fabulous, and so is her written piece. The tribute is bursting with love and so much talent. Thanks for sharing
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Pat,
What a lovely tribute to you! so uplifting! And it's clear that the apple doesn't fall far from the tree -- what a talented young woman! And yes -- your lovely personality comes through in this portrait of you. This is why we love our Pat and her constantly uplifting messages to all.
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Pat, what an amazing piece of art done by your granddaughter! Such talent and intelligence with her use of words just like her grandmother. You should be so proud!
Husband11, hope your wife’s health continues to improve
Best wishes to all going for scans in the coming weeks (including myself).
Live each day Happy!
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LovefromPhilly..just wanted you to know I think of you. I hope you are just needing some respite time from BCO and are not suffering from self isolation or temporary loss of customer contact during COVID19. Hope any bone pain is minimal and you are continuing on Ibrance.
Pop in when you feel ready.
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Pat- what a talent!! clearly runs in the family, and your grand-daughter also writes beautifully!! Watching her blaze through this part of her life is the best reward for all this crap we have to go through..
Chico- Had an all-clear bone scan but still waiting on insurance to approve a PET or whatever they will approve. My dog is still with us, but slowing down some, taking only about half the distance of her walks and sleeping a lot more. I decided to stop the fenbendazole chemo-butter and let nature take its course. The vet interceded and is giving her steroids and we have done some IV-fluids because she has a lot of calcium. I think she still has some time, ate a whole pork chop for dinner last night and happily chases her ball at any moments notice. It is coming up on a year from when the vet sent her home to die, so we have gotten wonderful times. With the steroids her weight is back up, she has not had any breathing problems that her lungs mets were giving her, and so this is a very sweet summer...
Now with COVID, she is my constant shadow and we hang together all day, everyday. I think all the puppies in the world are having the best times from all this sheltering in place we are doing
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That is beautiful Pat.
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Can I get a consensus on how long it took for Ibrance and antiestogen to start working?? I am just finishing up my 5th cycle and my tumor markers are not going down, not up but kinda up and down by a few pts monthly. I have my 1st scans on tues., last months scans were canceled because of Covid-19. If Ibrance doesn’t work does that mean all the CDK 4-6 inhibitors will not work? What would be next? Confused and Nervous
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Pat- thank you for sharing. How wonderful to read something so full of goodness at times like now.
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Pat...that is absolutely beautiful!
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Imagine, for some people, tumor markers are not useful. My MO does not do them at all. He has no faith in their reliability. It may be lucky that your first scan was delayed by a month. It is more likely that you will see improvement now. A lot of your questions just don't have answers. Confused and nervous? Yup. That's where we all live. The more of that you can give up, the happier you'll be.
Pat, I see your work reflected in hers. Does that make sense?
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Pat, Thank you for sharing your granddaughters tribute to you. She is so very talented in her art and writing. You must be so proud of her. Reading your post was such a nice way to start the day!
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Cure-ious I am so pleased to learn that your bone scan was clear & hope the same for the Pet - what a bore having to wait for insurance to approve. Wonderful news about your dog and how fab to get to spend lockdown with her. Like Oncs vets can’t really tell how long we or other animals have left.
If I remember correctly you have been on I/L for a year or more longer than me (46 cycles) well done you are a star. I had a cycle off at Oncs suggestion because of Covid19. I decided to restart thinking that although I may get the virus I do have cancer so best to fight the warwhich I have the ammo for.
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Pat, I'm astounded at this level of artistry, prose and insight from a 16 year old! What an amazing painting and of course it's simply the best kind of tribute a granddaughter could give to her grandmother. How wonderful that she chose to honor you this way. I cannot get over what a beautiful watercolor she did!
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Hi Imagine. I saw a reduction in the size of my tumors by my first scan (4month). NEAD by the next scan at 8 months. TMs have always been low for me.
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Imagine: go by scans. Not everyone has reliable tumor markers. If they are reliable for you, look for major trend..not a variance. When I progressed, confirmed by MRI, my TM tripled.
Ibrance+ antihormonal will take some time. I was NEAD by CT scan at 9 months. Stable is good, too. Scans are the key.
Edited to add. Just because Ibrance combo does not work or eventually you have progression, does not mean to rule out all CK4,6 inhibitors. Verzenio can be the next one to try. It is also used as monotherapy.
I was to go on Fulvestrant + Verzenio as next line, but liver mets needed some quick chemo love. Ha.
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Tina2 - frequqency of scans. Right now, about every 3 months. First in Sept 2019, PET, when biopsy revealed cancer. 2nd CT Jan 2020 to evaluate effectiveness of Ibrance, 3rd CT April 2020 evaluate treatment. Initially Oncologist wanted second PET in Jan rather than CT, but insurance would not pay. DRs have explained that PET finds activity, but CT does a good job of size if you known where to look. Good news, tumor has shrunk from 2.3 cm in Sept 2019 to 7mm April 2020. Taking 125 mg Ibrance since first week of October 2019. Blood counts very low, experience lots of fatigue, but usually does not stop me from doing things. Sometimes, hard to get up in AM, but do not really feel like sleeping either.
SerenityStat - and others taking iron supplements. Any guidence from DRs? My DR is not a fan of supplements, and tells me to get what I need from food as a better source than supplements. From what I've read, most in the US do not need supplements, get plenty in food. But most are not taking Ibrance. Literature says you can take too much. But it is confusing. One site suggests that plant based iron is not as well absosrbed as meat source, that age, diet, health issues might contribute to low values. Vitamin C seems to help absorption. Many food products are "fortified" (the bread, milk, yogurt I eat, are not fortified). https://www.health.harvard.edu/blog/healthy-diet-key-getting-iron-need-201502127710 "The USDA recommends that women between the ages of 19 and 50 get 18 mg of iron a day, while women ages 51 and older and men 19 years and beyond need 8 mg a day. ". Hmmmmm I suspect that I might not get much more than the minimum recommeded, when I look at sources of iron, iron content, and what I eat. And nutrition is one of the few topics more controversial than how to load a dishwasher or which way the toilet paper faces.
SandiBeach57 - do you mentioned that you are NEAD. Do you still get scans? I'm hoping my tumor shrinks into oblivion. And if it does, whether periodic PETs are of value, and what the risks are. Insurance might refuse to pay. They have already denied the genetic tests for BC which looked for more than 20 markers, none found. The denial is in appeal.
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Bluegirlredstate.
When I was on I/L (3+ years), I had scans every 3 months, CT and bone to monitor my dying liver mets. The CT eventually showed no liver tumors.
Last year, my MO started MRI to monitor liver. So I still had 3 month scans, but alternated with MRI.
Fast forward to 2020, I had my first PETCT scan when MRI showed questionable area in liver. Strangely, the PETCT and ultrasound showed nothing. But 3 months later, a second MRI showed liver progression.
I am now on generic Xeloda. I miss my I/L. I was on the100mg dose. My neutrophils were low, but acceptable to restart new cycle. Had occ fatigue days, so just rested on those days.
Hope this helps.
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Interesting SandiBeach, because I have only had PET scans for the past four years (after an initial MRI) but the PET scans regularly picked up my liver mets...
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Just to add with above discussion--- I have asked MO about ordering MRI to monitor my liver met. I had read on here about using MRI scans to monitor liver involvement (as Sandi's above post). My MO said MRI is for "vascular uses" and did not want to order one for me. ???? I don't really know what she meant, but we do CT with contrast to monitor my liver met, and to see other organs---CT is of the chest, abdomen, and pelvis.
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Here is a link to an interesting paper published last fall that has an updated analysis of what cancer biomarkers correlated with shorter or longer responses to Ibrance+AI, from the Paloma-3 trial:
https://clincancerres.aacrjournals.org/content/cli...
Summary: I/F Response was not affected by the levels of CCND1, CCNE1/2, CDK2/6, RB1, CDKN2A, or ESR1 genes
Patients with both luminal A and B disease benefited to a similar degree from the addition of palbociclib to letrozole
Those with high levels of CDK4 progressed faster on the placebo/AI arm, but high and regular CDK4 respond similarly to I/F
SENSITIVITY to Ibrance: Stronger responses were found in tumors with high levels of FGFR2 and ERBB3 (HER3)
also some other genes noted (SMAD2, TIRAP, SETBP1, KRT19, GSTM3, SORD, CYR61, CDK4, EZH2, MDK, THBS2, NNMT, TMSB10) to be associated with a longer response time
RESISTANCE to Ibrance was correlated with high expression of these genes: CHI3L1, PDCD1, PHGDH, PORCN, LPL, PIK3R5, STEAP4, NUMB, ATF6, TNFRSF25, HHAT, BMPR1B
They find that some proposed alterations associated with resistance to a CDK4/6 inhibitor (ie, CCNE1 amplification or RB loss) appear to be rare events in primary ER+ breast cancers, which is why so many subtypes do respond, and why those genes are not on this list
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The analysis identified PCDC1 as a gene that correlates with resistance to Ibrance. PDCD1 is another name for PD1, the immunotherapy gene marker. (checkpoint immunotherapy is antibody to PD1)
So low levels of PD1 are associated with poor response to immunotherapy but good response to Ibrance.
High levels of PD1 can be targeted with immunotherapy and improve the response of those cancers to Ibrance.
Most MBC does not have high PD1, but the prediction is that group with high PD1 will respond great to clinical trials combining immunotherapy with I/F, such as NCT02778685
(This subgroup might also be expected to respond well to immunotherapy anyway, even in other combinations without Ibrance)
It does suggest that those who do not respond well to I/F might want to check if they have high PD1 expression, and if so, try the I/F again in conjunction with immunotherapy
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Candy, my MO said that abdominal MRI is the gold standard for evaluating liver mets. The evaluation occurs during the arteriole phase in liver and that is why the contrast is injected rapidly. Mets are seen during the arteriole phase. I don't understand the biology of that process.
The MRI picked up suspicious area in my liver during this phase when the PETCT and ultrasound did not. We rechecked MRI at 3 months and boom..liver mets prominent both lobes. CT and ultrasound also positive. So in my case, MRI picked up mets first.
Maybe get a second opinion for MRI usage. I am not a oncologist, so I have to depend on my MO to monitor my disease and I fully trust her.
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