Ibrance (Palbociclib)
Comments
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Woohoo Intolight !!!!! Praise God !!!!!
I spent some time this morning reading about the legislation Cure-ious spoke of in her post about Social Security Disability and MBC. Then I found the numbers for my House Rep and Senators and called their offices to voice my approval for the Bill. I hope the message is truly given to my Reps and they truly listen.
MY CHALLENGE TO ALL HERE IS TO CALL YOUR LEGISLATORS AND VOICE YOUR APPROVAL FOR THIS BILL. MAKE OUR VOICE KNOWN. Maybe we can make a change for our MBC sisters and for ourselves.
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IntoLight,
I’m so happy to hear that!!! I was reading about your concerns and my mom’s scans were also this month.0 -
Thanks Pat G for your excellent suggestions. I take 125 mg. I would have never have thought of them. I will post again early 2020 and if things are going well I will see if I can palm some Ibrance from someone. The Fed Ex idea is also definitely worth exploring. The next time I speak with the specialty pharmacy (and as we know they are very persistent to get their next order delivered) I will ask them about sending ibrance out of the country.
kitkit
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Intolight, I'm so happy for you! Let's double that 3 years!!
Love and a twirl from PatGMc
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Not a wealth of info here about diet and cancer but an interesting little article:
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Another wrinkle to the Ibrance delivery question We plan a camping trip in July. Have no idea where we will be or exactly how long we will be gone. I see my oncologist every 4 weeks so I just need to be home for those. Has anyone gotten more than a month's supply of Ibrance from Pfizer? I would like to have those delivered to my home so I can take them with me. Since we will be in an RV we won't have an address, i.e. Airbnb. Thanks ladies in advance.
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awesome, awesome, awesome, IntoLight!!
Awhile back Onclive had a video talking about how they sometimes get scans which show improvements after 2-3 years, which is not what they see normally with drug, and they said that its because the Ibrance is helping the immune system take out some of the cancer. Therefore the longer you go, the more you are actually healing and reducing the cancer burden in the body. Your immune system is great, its just that most of the cancer has buried itself in immunosuppressive immune cells, and they need a good drug to expose it..
Skyguy, Yep, most of these trials seem to be aimed at making incremental progress, which it is frustrating when the drugs in question really push the definition of what are "acceptable" side effects. We know immunotherapies have generally low SEs with much longer duration. We do have a couple of immunotherapy trials, the JPCE, PACE, and MORPHEUS, but all are being really silent right now, so maybe not a lot of good news to share.
Fortunately kattysmith here is ER-positive and has responded to Opodivo + EP4 inhibitor, so at least we know its possible!! (but what also makes no sense is that she's the only MBC patient in the whole trial!)
There is a lot of money and technology being applied on the immunotherapy front, just right now its mostly geared to getting it to work on cancers that are more receptive to begin with. So we need the new powerful meds to extend our time on anti-hormonals, so we can be here and in relatively good shape when immunotherapy opens up for us. There will be an update on Venetoclax with faslodex, which is very early but apparently they think it looks really good and few SEs, the main thing is to look at how long the PFS was and did the trial include people who were previously on Ibrance.
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Wandering, Pfizer sent me two bottles at once at the first of the year. I bet they'll do it for you.
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Fantastic, Chris. Cool that some are GONE.
FundFinder (a PAN Foundation service I subscribe to) sent me this today:
"Metastatic Breast Cancer (Copay) is now open at Patient Advocate Foundation Co-Pay Relief." That would be PAF not PAN. PAN sends me notices of all funding sources not just their own.
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IntoLight, I am so happy to hear about your good results, and hope you have many more just like this!
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intothelight great news on your scans.
Tanya
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Cure-ious, Venetoclax appears to be a BCL2 inhibitor. I havent had Foundation One testing in a while, but dont recall seeing if they tested for BCL2. Looks like BCL2 is present in about 70% of breast cancers but I havent seen that represented here.. Is it only applicable for patients that have BCL2?
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Hi, please my mum is taking palbociclib plus exemestane for 2 weeks. Today her TM's went from 199 to 350, we are quite scared, any of you had her TM's so increased after less than one month? thanks
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I am reposting this story from NYT in a couple of threads- an exciting discovery for those with PTEN mutation or downregulation, this is very common in breast cancers!
https://www.nytimes.com/2019/05/17/health/gene-mut...
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I found this article (from March 2019) that discusses an unexpected POSSIBLE benefit of CDK 4,6 inhibitors.
We already know that Ibrance stalls the tumor cell cycle, but according to this article it might also cause the immune system to mount an attack on tumor cells..paraphrasing here. Apparently it might cause the reduction of T reg cells (tregs) that "damp down the immune response".
Anyways, here is the article. Go to last section "Dana Farber Oncologists Explain CDK 4/6".
https://news.cancerconnect.com/breast-cancer/cell-...
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PTEN is more often not mutated but instead its activity gets down-regulated in MBC, esp when cancers become endocrine (anti-hormone)- resistant:
Moderate reduction in PTEN, without complete loss, can activate the PI3K pathway to cause endocrine resistance in ER-positive breast cancer, which can be overcome by combining endocrine therapy with inhibitors of the PI3K pathway.
So would the i3C supplement (now shown to rev up PTEN activity) help those of us where the hormonal therapies may be starting to fail?
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SandiBeach, thank you for the wonderful, hope-filled article! My oncologist and I have talked about the checkpoint inhibitors and their potential for MBC survivors so I love reading further confirmation of that possibility.
Hey, all you pioneers, good things are coming!
Love from PatGMc
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Dvdsp; I looked up my tumour marker numbers and they were 359 in April 2018 and dropped to 66 one month after I started treatment. However, my mets were in the plura of my lungs and as I also have recently (2015) been treated with ovarian cancer my onc has me use only the CA125 tm. This is for ovarian cancer but seems to work very well for me with lung mets. My onc told me that the breast cancer tumour markers were very unreliable although frequently used in the US and that he would not recommend them to me. I only get my blood and tm's checked once a month so I think 2 weeks is very soon. I don't know if this is helpful at all but I was originally told that it takes a little time for Ibrance to take effect. My very best to you and your mother.
Cathy
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Dvdsp, there can be a flare up in tumor markers from dying cells that lasts for a short while. Tumor markers also can go up for reasons unrelated to the cancer - inflammation, other meds, etc... While that is a rather large jump, I'd be very interested in seeing her numbers at the 6 to 8 week and 12 week mark. Also, as said above, many doctors don't even do tumor markers because they can be so unreliable. Ibrance is a wonderful drug. I hope her team doesn't move her off it too quickly. That said, if her numbers are still going up at the 6 to 8 week mark, it might be a good idea to have scans done.
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Dvdsp, I'm surprised tumor markers were even done after just two weeks. Blood work would normally be done at two weeks to check white count but tumor markers at that point would be meaningless. I hope her doctors let things pan out before evaluating your mom's response to Ibrance/Letrozole. All the best.
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It took me 9 months on Ibrance/Letrozole to see amazing changes. Unless scans are telling you otherwise, do not give up on this combo too soon.
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I second Sandi!
My giant breast tumor and lymph node tumor truly "melted" away...I could see changes within 6 months and by 9th months pretty much they were no longer palpable. Bone lesions no longer active. Hang in there! My MO doesn't use TMs...so I don't have any advice to give on them except what I have read from other Ibrance dancer's on here is that they have experienced TM fluctuations on Ibrance especially in the first year.
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dvdsp
I want to send my reassurances along with the others.There was no significant change in my condition until my second scan at 1 year, when I had a lung met shrink by a third and stability in all other mets.
Hang on there until a scan reveals the truth.
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dvdsp - I concur with the other ladies. My MO doesn't do tumor markers, as they are unreliable.
Intolight- yay!
Philly - you look fab!
Just checking in! Hope everyone else is well.
Jaylea- glad you're able to eat.
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Hey all. Just popping in to say Howdy.
I am off work today but working Saturday and Monday (12 hour shifts) of this Holiday weekend. Boohoo. Hope you all have a good Holiday weekend with family and friends doing what you love.
Update from here---- I met with my PCP on Tuesday. Didn't go so well. I know he is not a miracle worker and there is only so much he can do. But I don't really feel like the appointment was very successful. I mentioned my chronic constipation with all the meds. I said I drink a lot of water, eat fiber, and have been walking on the treadmill for exercise. He recommended Miralax or Linzess. The Miralax is used as needed, the Linzess is DAILY before breakfast, not as needed. I just hate to go that route-daily pill. Another pill to take and I feel like I would depend on that pill to have a BM. Good grief.
Then I mentioned the pain- arthritis, AI use, or bone mets?? He recommended Fish Oil tablets(????) or Neurontin. His 2 recommendations. I ask about Effexor (for hot flashes and posted here may help with AI associated pain). He totally brushed that off. I read about the Neurontin. Don't really want to go that route. And fish oil---will that really help?!
What frustrates me is the nurse asked the routine question about depression while taking my Vital Signs. I told her I was having depression. The doctor never even brought that up. Did he even see my response the nurse charted.
I didn't even mention the fatigue issue.
Maybe I am my own worst enemy. Maybe I should take the meds he recommended. I just don't think we are really getting down to the main issues.
I see the MO on June 4. Maybe that appt will go better. Maybe someone will really listen to me.
So, off I go running errands on my day off. And we are having a water emergency in my town---a LARGE water leak they cannot locate.
Hugs to all.
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candy I can completely relate.
My PCP is the worst! I am done going to see them/him.
I think the issue is that we are in a specialized group medically, and they just don’t really know a whole heck of a lot about MBC.
I hate to say it but I use my MO as my PCP. And they seem fine with it.
Not sure where you’re being seen, but at my hospital, we have oncology psychiatrists...so I see them for the Lexapro prescription and outside of the hospital I see a psychologist to help me through the mental/emotional stress of the day to day. She is versed in working with oncology patients and often has helped me immensely as a guide. Also, my hospital has social workers who I’ve leaned upon for support and they’ve been fantastic too.
My PCP came in the room for about 3 minutes, gave a dead fish awful handshake, and rattled off “what they’re going to do” about me at a clip speed. One of the things he slipped in there was that they were going to increase my dose of Lexapro. Thankfully I caught that one, and questioned it. Why would they do that? Don’t they realize I’m working with a psychiatrist who has my business handled?
I was sooooo annoyed I am never going back, except maybe to get the flu shot.
I’m with ya on this one
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I just had a long talk with my PCP yesterday candy-678. I had numerous issues as well and wanted to be sure that each is addressed. I have many spots on my skeleton but only some of them are bone mets and the docs don't know for certain which, other than the one that was biopsied before dx in March. Most of the spots are Paget's Disease which is benign and is now being treated with Zometa. It's a little unnerving to have pain in places that they can't say what the cause is. My hip has really been bothering me to the point of not being able to walk well on that side, which then tightens up my back and gets that all talking back to me. I have spots on my pelvis, and femur where my hip is bothering me but they don't look like cancer they look like the Paget's but can we be sure? And round and round we go. The oncologist wasn't taking it seriously. The orthopedic oncologist wasn't taking it seriously. The PCP wasn't sure.
This morning the pharmacist called to check on my SE after my first round of ibrance. I mentioned fatigue...oh wow you all were not kidding about that. It was nice to have someone just say "lets blame the fatigue on the ibrance and not depression at this point". So I feel what you are saying. My PCP was sort of "dunno" and the pharmacist was more "yes let's go this way". I much preferred the pharmacist's point of view.
I hope you get answers.
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Ichangedmyname - I WISH I could got to my MO for more issues less related to cancer. She has been very firm and specific with me about this. I miss my former oncologist for this very reason. Of course this was back in 1995 when things were way way different in oncology but omg he took care of everything including flu shot!!!
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Candy, I fill out a long set of questions about all body systems in the waiting room at each MO appointment. I'm pretty sure I could write that my arm just fell off and I would get no response. The last few times, I have written EXTREME VAGINAL DRYNESS and gotten nothing. I have a PCP that I rarely use but I keep them because you can usually get in to see them on short notice. I'm changing gynecologists right now and am having to wait three months to see the new one. I may see my PCP to tied me over although none of them can do anything to help. That's the first reality I had to accept. None of them can do anything. I would choose the Miralax for the constipation and find a doctor who can prescribe an antidepressant. I get mine from my therapist but you have to live in a state where that is allowed. PCP's prescribe them and your MO should, too. Ah, SHOULD. One of my favorite words.
Has anyone heard from Lauren?
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Candy, IChangedMyName, and others...yes, I too go to my onc for most of my medical needs. I haven't seen my PCP since before my initial dx in 3 years! Not that I haven't tried to get in on short notice, but she is the head of the dept and I can't get in for UTIs, etc. for same day appointments as she is not available. I end up seeing someone else. I do get an annual call from her nurse to check up on my other meds so I believe she reviews my chart, but my onc usually handles it and is happy to do so. Even my flu shots. I have thought about changing PCPs but don't really have a reason to go through all of that hassle when I have a willing onc and no other dx. Also, my onc blames my fatigue and pains on the med combo but more on the Letrozole since I struggle most during my off Ibrance week.
I have never had a pharmacist call me--that is handled by the nurses. We are all so different! My onc says since I am able to get my Ibrance easily without going through the extra specialist hoops, why do that? The specialist pharmacy was added after I started and we have never switched over. I get my meds directly from the hospital pharmacy which is close and all in-house (Kaiser.) She lets me pick up my meds the same day as my labs and will call if there is an issue before I start a new cycle. The monthly 20-minute (one-way) trip to the hospital for labs and meds has become an outing for me! As you can tell I am all about doing what is easiest if it works properly. Something in this struggle has to be easy because nothing else is.
We are finally getting some warm sun here in San Diego which should make the tourists happy. Hope everyone gets some sunshine today. Chris
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