Ibrance (Palbociclib)
Comments
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JoynerL, so glad your trip is going great! I appreciate the word about pomegranate. I've read about that here but in the pounds of booklets that came with my first Ibrance shipment, they only mentioned grapefruit. Anyway, it's good to be cautious and thanks for pointing it out!
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joinerl. I'll be on the Chesapeake Sept 15. Can't wait! We're going to try to book some type of cruise on the bay. I'm not a sailor, like you, but love the water and historical sites. I'm sure the bay will fill my inner explorer dreams.
Intolight Ugh hate the scanxiety. Better together, though. It's right before I leave on two vacations! It just cannot mess up my plans.
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Muddling, somewhere along the way, I read about pomegranates too. I think that blood oranges are also supposed to be avoided. Please, anyone else chime in who believes that to be incorrect.
Grannax, where on the Chesapeake will you be? We are off of the Rappahannock in the southern part of the bay. We should be back by then, I think.
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Thanks for the kinds words about my photos. We are so lucky that God united us 10 years ago next month (he was almost 2 yo when we adopted him) with the most kind, super smart, spunky, uber-athletic, long-haired hippy boy!!
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Regarding the mammograms, a little bit more about my experience:
When I had cancer in the second breast about 7 years after the first, it was a new primary of about 6 millimeters and low grade, ER/PR Positive. The first one had been about 5 centimeters and high grade, ER/PR Negative. The oncologist I had for the second one suggested I have big chemo again. The surgeon told me I didn't need to do anything beyond the mastectomy and he didn't even want to remove any lymph nodes but I insisted. He said I would be more likely to have a recurrence of the first cancer than to ever deal with this one again as it was caught so early and the mastectomy took care of it. (At the time we didn't know I was BRCA1 positive. That was checked after my daughter's diagnosis.) All that said, the first metastasis was a 1 centimeter lymph node on my chest wall and wouldn't you know, it's characteristics were the same as the second tiny-baby-never-gonna-be-seen-again cancer!
Joyner, I'm so glad your trip is going well and I do hope the "suits" fit well. Oh, you didn't get them? Darn!
LaurenH, such a handsome and talented boy! I have a special place in my heart for parents who adopt. Good for you!
Grannax and IntoLight, you're both going to rock those scans! Let's have something chocolate to celebrate! Chocolate Covered Cherries for me (I"m all about the fruit) !
Love from PatG
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I no longer spend much time online due to work and depression but came to ask a question in another thread and thought i'd say hi to all my beautiful friends in this one, too. Hope you're all doing great. I'm stable so far which is good news.
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Ceci, we miss you!
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joynerL. My DD,'s friend lives on Kent Island. Is that close to you. I will be staying there from 15-21.
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Lauren-
Great pics !!! Thank you for your explaination about mammo's. It totally made sense. Your thoughts on this please----I have ductal with lobular features. Does lobular have incidences of 'spreading' ? I know when we first found the cancer ( before mets known ) my surgeon wanted to do both mastectomies and I said no. And if we would find early new breast cancer in the other breast, what would we do? I have read ( probably here, but not sure ) that with MBC they don't do surgeries i.e. lumpectomy or mastectomy. Which always kind of made me upset, like we don't matter enough for surgeries like other women would have.
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Grannax, Kent Island is charming but on the Eastern Shore in Maryland and thus not near our house. However, if we go down the bay on our way home, we will go under the Chesapeake Bay bridge right by Kent Island. I'm thinking that it will be before you arrive, but I can't be sure. I'll let you know!
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Grannax, Kent Island is charming, but it's on the Eastern Shore in Maryland and thus not near our house. We are on the Western shore in VA. However, if we go down the bay on our way home, we will go under the Chesapeake Bay bridge right by Kent Island. I'm thinking that it will be before you arrive, but I can't be sure. I'll let you know! It would be great fun to wave!!
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Candy, I am not the expert here, but the explanation from my surgeon is not that they don't care, but that for me since I am stage IV, my mets were so widespread that it would not have made a difference. The new meds now are targeting the tumors. Since none of mine no longer show as active, the meds did the trick for me instead of a knife. For that, I am thankful for the new meds. Perhaps that is the goal? It would be good for you discuss the goal of your onc for you.
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Hi Candy - I am not familiar with ductal with lobular features. I’m not sure what that means.... Lobular can move to the other breast but it is much less common than ductal.
However, I think the 'what would they do with a new BC' question is very specific to the person. I would assume that if the person is NED, surgery might be in order. Considering we are all already on meds, we would presume that a new cancer must have different features if it is growing in the face of the existing therapies. So like a triple negative new BC when you are treating hormone positive mets might require some chemo to combat it. Bottom line I think it is very individualized at that point.
I’m not sure if that is helpful or not but maybe others have thoughts.
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Lauren-
Thanks, that did help. Cancer is confusing to me. We know I have ER/PR +, HER 2 - with mets and we are treating it as per protocol. So it is hard for my head to wrap around that new cancer could come about --- breast, colon, etc. that is totally unrelated to the current cancer. Creepy that one kind is roaming around in my body and new kinds could form.
My PCP told me at the beginning of my journey that some docs pretty much stop seeing their MBC patients and let the MO handle everything. They stop doing some routine labs, i.e. cholesterol, thyroid, etc. He said he would continue to check things with me. And my MO said she didn't want to do routine mammos on the remaining breast. So in that case, if a person wasn't getting routine checks--labs, colonoscopy, paps, mammos, etc, new cancer could go unchecked.
Maybe it is just me, but I feel if I request tests my docs will just shake their heads and think to themselves, " she is in denial, she has Stage 4, no cure, terminal at some point unless we find a cure. What is the use doing these tests and spending the insurances' money." Would the insurance even pay with the MBC diagnosis???
Sorry, just thinking aloud as I type. Does anyone else out there think the way I do??
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Hi Candy, I have been experiencing the opposite. Doctors and hospitals make a huge amount of money from running tests and MO,s in particular make money from the chemotherapy they prescribe.
The more they can give us the better it's for their pockets.
We are typically overly medicated with terrible consequences due to toxicity to healthy cells.
Ultimately the overall dreadful statistics and results speak for themselves, but what choices do we really have?
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dsodasso- I think I may have posted this before--if so, please forgive me!
I just want to say that if you are having difficulty tolerating the 125 mg dose of Ibrance (meaning that your WBC, ANC and/or RBC are dropping too low and/or taking more than a week to recover you should consider dropping to the 100 mg dose. There is evidence (presented at the San Antonio Breast Cancer Symposium last December) that reported near-equal PFS (duration of response varied by around a week, and actually the 100mg dose had the best response-- although none of the variances was statistically significant.)
From a cell biology standpoint, it is preferable to be on a lower dose if that means you can take a full cycle (21 days) with the minimum time off (7 days). For a very small percentage of patients who can't tolerate even the 75 mg dose, adjusting the "on" time and "off" time to maximize the time you CAN tolerate on medication while minimizing the "off" time is a reasonable approach. In the beginning, when I couldn't tolerate the higher doses and we were trying the 75 mg dose I asked my onc what new do if I couldn't tolerate the 75 mg dose. She said we could try a shorter "on" period --say 16 or 18 days on, and a week off before we would decide that truly couldn't tolerate any reasonable on/off period. There is no real magic to 21/7! I do know of some patients who have had good, durable responses with 14 days on and 7 days off...
I was initially very reluctant to lower my dose, but I have completed my last 38 cycles at 75 mg. It's very effective for me (and apparently others, as reported at the conference) and I have had minimal side effects. My onc actually says that she prefers using lower doses of most medications in her stage 4 patients since she likes to minimize the collateral damage to the other organs and energy level....she says since we are in this for the long haul she wants to do her best to ensure that I can tolerate the long series of medications successive treatments will entail.
I hope that you find a tolerable regimen soon and that you have a great response to it.
Elizabeth
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JoyenerL I miss you all too, will try to stop by more often!
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mica1
thanks very much for posting the useful info. My doc has mentioned the Ibrance/Letrozole regime a few times as my probable treatment , even though I am still in the middle of imaging tests, so I am researching it, and that is good to know about dosage.
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I am currently on 75 of Ibrance with letraloze (ferema) I struggle to get my neutrophils to 1.0 each month, and only make it about 50% of the cycles. I had a consult with Dr. Gelmon in Vancouver, who is one of the principal investigators on the PALOMA trials. she is suggesting that we go to a permanent 3 weeks on, 2 weeks off schedule. Apparently she is using this with good results. The thought is that my neutrophils are alway low as I have had a lot of radiation to my pelvis and femur, which are normally bones that produce a lot of neutrophils. My scans have been good for a year. So there are options even when 75 for 3 weeks on and a week off are too toxic. As the oncologists get more experience with this new class of drugs, they learn how to use them for maximum effect.
BTW in Canada the oncology drugs are bulk purchased by the provincial governments, and the oncologists do not make any money off their sale. Their income is the same regardless of which drugs that you are on. In some provinces, the drugs are retailed by for profit pharmacies but in other provinces, they are distributed by the Cancer clinics. I have been in some form of treatment for 8 years and the only drug that I had to pay for was magic mouthwash as my retail pharmacy had to compound it.
Hobbes
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what is magic mouthwash Hobbes12?
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Its a mixture of antibiotics, antifungals, and pain killers in a solution, that you either "swish and spit"or "swish and swallow" depends on your situation and the ingredients. Swich and swallow is used if your lesions are in your gut as well as your mouth. Its used for mouth sores which can extend into the gut. Different clinics use slightly different formulas. It is not on the provincial formularies as it has to be compounded by the pharmacy depending on your prescription. It helps with mouth sores. It numbs your mouth and kills the bacteria nd viruses in your mouth which cause the pain. It has other names sometimes of the clinic that distends it.
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Ibrance & fulvestrant did not work for me.
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Question: Is there anyone else here who is on Ibrance plus a hormone blocker and is Her2+? Ibrance is not FDA approved for Her2+ patients but my doctor gave it to me anyway (citing favorable trial results as the reason for the exclusion) and he also has me on Herceptin. Just wondering if there is anyone else like me.
Thanks!
🤗 Laure
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Today, I had my staging after 12 cycles of I/L. The primary tumour is completely gone (no surgery, just by I/L), it cannot be seen by ultrasound nor mammography any more. I have still 1 enlarged axillary node (2 cm). And the ct shows no changes in my spine mets, while the organs are still clear. The CA15-3 fell again a bit within the last month to 66 (starting value was 39, highest value was 171 in 02/18, I believe due to flare reaction). So overall very good news!
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NettaGER, great news! Yay!
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NettaGer, doing a happy dance here for you! That is great news indeed!!! Keep posting the good news.
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Awesome report, NettaGER - so happy for you!
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Nettager: Wonderful news So inspiring for the newbies here. Long may you continue.
Hobbes
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Nettager; So happy for your great results! Wonderful to have inspirations like yourself.
Lauren; I don't know of others Her2+ taking Ibrance/Letrozole but there must be as my oncologist told me that there will be a paper put out in December at ASCO I believe talking positively about the results for Her2+'s. I'm so happy you are having such great results and posted that you were on the Her2support site. I think the triple positives there need to know of all the options available. I loved your family pictures. Such a fun holiday. Thank you for sharing.
Cathy
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Mica1- I was first started on the 125 Ibrance and was told before finishing the entire bottle (still had 3 pills left) to stop as my counts were too low. It took me 6 weeks to get my counts up to a normal level before I could start the next cycle. ONC said my ANC was at .3 which was really low. Now I am on 75mg Ibrance. I will see in a couple days if my counts are ok to start next cycle.
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