Ibrance (Palbociclib)
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pboi, this made me think of my friend who had MBC mets to the brain. All her doctors said the only choice for her was a craniotomy, that she didn't qualify for Gamma Knife. She had her records sent over to the Gamma Knife Center anyway. When she was about to start the craniotomy prep they got word from the Gamma Knife doctor that she was a perfect candidate. She left the hospital and went right over. I can't remember exactly how many years ago that was but it was a bunch!
This same woman had 4 lung mets some years before that. Her oncologist said she was not a candidate for surgery and no surgeon in our city would do it. She found someone in Dallas who would and those tumors were removed. They have never returned.
My friend has remained MBC-free without treatment for many years. Her name is Judy and I celebrate her every day!
All that to say, have you considered taking your records to someone who does Y90 and/or a surgeon. (I also had a woman come to support group who was 4 years out from having MBC removed from her liver surgically. Still all clear.)
Love and many prayers as you make decisions and Hooray for stable!
PatGMc
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MrsM.
Im surprised youre not taking magnesium too. My drs told me I need it for my bones. Plus your muscles like it and it helps you poop better and sleep better. It just might help prevent some of those unwanted side effects.
Anyone else take it? How are your SE ?
Gailmary
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gailmary, my husband was told by his primary doctor to start taking Magnesium so I did too. I never connected it to headaches and vomiting that started a few months later. To make a long story short, I made an appointment to go in for a scan of my brain, thinking I must have brain mets. A few weeks before the scheduled scan I ran out of the Magnesium and day by day I got better. My blood counts show that my magnesium is high all by itself! Maybe that's why sleep comes so easily!
Love from PatGMc
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hi divine, I’m so sorry to hear your news. Something to consider is getting a rad onc opinion regarding CyberKnife treatment. I’ll have to say, for me, it was the easiest darned cancer treatment ever! I’m on Verzenio/Faslodex/Zometa and stable....
Wishing you all the best....
Regarding talk about bisphosphonates: I do not have a reference, but the plan for me is Zometa monthly for 2 years, then quarterly after that per my MO.
Peace Z
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Airlinegal thank you reaching out to Leapfrog. As Pat said please send her our love!
And my very best to you too! So many wonderful friends here. 😊
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thanks for all the info.did someone say no flossing on ibrance?
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gailmary, I take a calcium supplement called Bone-Up, and it includes several different vitamins. Really, I should not simplify it as just saying I take calcium. Here’s the list of ingredients:
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I also take Bone up
I take liposomal vitamin c 1000mg
A medicinal mushroom blend
5000 iUs of vitamin D
20mg melatonin (nighttime)
Jenny - I don’t think I’ve ever been told not to floss. Flossing is so important to our dental health - I floss twice a day :
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Pat...thanks for your reply. I found out that my facility has a IR that performs the y90. Going to make an appointment with him and discuss my options.
PB
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Bubblebeard and pboi...Such great news your tumor is at 3cm now!! Love hearing positive stories. I was also diagnosed about the same time with a 15 cm liver tumor and numerous bone mets. I wondered how you both were coming along with treatments. I completed Taxol #17 and getting monthly Zometa.My tumor shrank almost in half after 3 months and recent scans show reduction of only .5 to 1 cm now 7.3 cm. Bone Mets are stable and slightly reduced.
Next plan is to take Ibrance and not sure of the AI yet. MO is uncertain how I'll respond since Tamoxifen failed me with my first diagnosis. I know from these boards there are many lines of treatments.
I've been off this entire time and now on LTD and SSD. I feel like I can still work, but doc is limiting me to 20 hours per week if I go back. Better for me to be on disability unless I can work at least 30 hours for full time benefits. MO and dedicated cancer social worker strongly convinced I should not go back to work. Really struggling with the right choice.
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bbpie, going back to work is definitely a difficult and personal decision. I was working my dream job when dxd. fortunately, I had so many sick & vacation days saved up I was able to work minimal days for a long time. Once those were used up I went on disability. It has been a good choice for me since I was so close to retirement age and my finances are secure although I miss my job. Coming off disability gets all of your finances really confused so make really sure if that is your decision. I chose to not push my fatigue and now do what I want feeling free to rest and relax at my leisure. I have been almost 3 years on I/L, 2 of those on disability, and I do not regret this decision.
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My wife has been in ibrance / letrozole now for around 21 months. Her latest MRI and Pet scan show that her liver mets are stable, ascites is gone, and no signs of spread elsewhere. Before the ibrance / letrozole she was on xeloda for a year and half, roughly, and it continued to work, got her liver mets under control, but she got onto the ibrance / letrozole to lessen side effects, in particular the hand foot syndrome was really bothering her with the xeloda. She certainly has her share of side effects with the ibrance / letrozole (75mg) as well.
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Husband so very sorry to hear about the side effects. But happy to hear word of the positive response. And bless you for being there for her. I know how painful my journey has been for my DH but his love and support mean the world to me.
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Divine, if it were me, I'd stop curcumin while taking Ibrance.
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My wife takes vitamin D, vitamin C, calcium, maitake extract, metformin (doesn't have diabetes), lactoferrin, melatonin, sometimes AHCC instead of maitake. Sometimes we drink chaga tea. It might help her sleep. Works 100% 3/4 of the time, LOL.
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Husband, why does your wife take metformin if she's not diabetic? Just curious!
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There is some suggestion that metformin may be anti-cancer. Nothing conclusive, but its relatively safe, cheap, seems to reduce cancer recurrence in diabetics, works against breast cancer in the petri dish, and is the subject of many ongoing clinical trials with cancer patients.
https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-015-0598-8
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Hi everyone - love keeping up with this active group!
Divine/Chicagoan - I have read the same pathway info about Tumeric/Curcumin but I know several here take them - Pat being one of them - and continue to do well. Best to ask your Onc.
As far as additional resources, there is an active thread here at BCO called “Breaking Research” and I have it set as a ‘favorite topic’ and I find a lot of great info there too. I will see if I can provide a link to it.
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Breaking News and Research topic link:
https://community.breastcancer.org/forum/73/topics/860294?page=31#idx_919
Husband - thanks for the metformin info and the 100%, 3/4 of the time giggle.
Love to all,
Lauren
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Yes, Lauren, I'm a big believer in Turmeric/Curcumin! I took an AI (Femara) without it and had some pretty dramatic side effects. I know this doesn't happen to everyone but I have a walker in my garage that reminds me why I quit the drug and went with no treatment for several years. I was stumbling and falling and my quality of life was slipping fast. It hurt for my feet to touch the floor.
I was NED after chemo in 2012 and took Femara until I just couldn't do it any more (18 months, I think). I retired from a job I loved as I turned 65 and qualified for Medicare. Within 6 weeks after stopping the Femara my side effects cleared up! (Talk about dancing!)
When the bone mets appeared near the end of 2016, and Ibrance was an option but only with an AI, I chose Arimidex and added the Turmeric. Even with the Ibrance fatigue and GI SEs, my quality of life is better than back in those days with Femara minus the Turmeric.
I know there are some Internet sites that say not to take it with Ibrance, I've chosen to thumb my nose at them. I'm a clinical trial of One who has seen this work for me. Two and a half years on and I've had a great response!
I once heard Dr. Lawrence LeShan say, "Your body believes ever word that you say." Mine believes in this plan I've chosen! My oncologist agrees!
Love from PatGMc
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Pat - I’m so glad you have something that gives you relief. And I love how you thumb your nose at info that your body doesn’t agree with! Keep on chugging with your tumeric and keep making us all smile!
Love to all,
Lauren
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I wish someone would simply measure estrogen levels on a AI, before and after curcumin, and clear up whether curcumin in fact inhibits a pathway strongly enough to effect drug metabolism. It wouldn't even have to be cancer patients to gain the knowledge as to whether an AI is effected by curcumin.
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Hello ladies,
Well, the results are in...my lymph nodes are positive in one breast. There is no corresponding tumor to be found in the breast. After loads of biopsies and every possible imaging study, my PET scan showed the positive lymph nodes in one breast plus two more areas: "enlarged and upper normal-sized mediastinal, subcarinal, and right are present with SUV max of 10.8 in the right hilum" PLUS "10 mm T6 lytic lesion with rim of slerosis with SUV max of 9.1" in the spine."
plain language, I have three cancerous areas: left lymph nodes under arm, right chest (thank god not in lungs), and mid-back.
After spending the last few weeks getting ready for chemo, surgery, and radiation, my doctor says NONE of these are in store for me.
I need to start Ibrance to try to shrink the tumors. Plus something to make bones stronger, and something like exemestane to stop the estrogen. By the way, I'm estrogen positive and HER-2 negative.
I am confused. In the past I've thought of this approach as "stopping treatment" for someone with advanced cancer that can't be cured. I am wondering: is this like AIDS that can be "controlled" now even though it's in your body, and you can live for many years?
Why am I not getting any of the other treatments? I have read enough that Ibrance is the new wonder drug, but will it keep me alive for years...or months? My cancer is not in my organs, at least.
If anyone has answers for me I'd love to hear them.
Thank you all,
kitkit
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Cross posting since it's been discussed in a couple of threads. Cure-ious mentioned NSAIDs as potentially helpful in the fight against cancer. This study, although not strictly related to breast cancer but to head neck cancers, points out that Ibuprofen and aspirin might be game changers only in those who have a PIK3CA mutation
https://www.sciencedaily.com/releases/2019/01/190125094224.htm
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That is very interesting Daniel. Makes it all the more important to have genetic testing done on the tumor.
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thanks for the post, Daniel, I had seen that also- they say NSAIDs give an overall survival benefit to those with cancers carrying the PI3K mutation, but not to cancers that lack the mutation. Most primary tumors do not have the PI3K mutation, but the mutation is one of the most common ways that breast cancer cells escape from anti-estrogen therapy and give rise to progression. I decided to try adding Celebrex to Ibrance-Femara, in hopes of keeping any PI3K mutated cells at bay for awhile.That's the same rationale as they are using now to combine I-F with PI3K inhibitors, hoping to push down any resistant cells that are developing and keep the cancer estrogen-driven.
There might be a second advantage, in that inhibitors of COX-2 (like Celebrex or NSAIDs) also work to deactivate some of the shields that breast cancer uses to hide from the immune system. Ibrance also helps the immune system fight MBC, and the two together might be even stronger in that respect.
I read that Celebrex does not have the blood-thinner activity of aspirin, but that it can be taken with a baby aspirin to get the anti-blood clot benefits that aspirin provides.
If nothing else, I can attest that it really helps with the arthritis and joint pains that you get using Femara!0 -
Kitkit, I had way more extensive mets than you mention and was put on Ibrance in June 2016. My lymph nodes under my left arm are what were found first, then it was discovered that I had spine and additional bone mets in many additional places. Since Ibrance, they have all shrunk and have been inactive for over 2 years now. Yes stage IV is scary, but my MO says the goal is to think of Ibrance as a way of managing your disease, like for diabetes. There are also other drugs being tested right now for the next step. Ibrance is no guarantee nor is it a wonder drug like you say, but for many of us it works and we are happy to get on with our lives. Many of us swim, sail, walk, and work. It is different for all of us, but I am thankful for it. Feel free to ask questions about side effects and to just vent as you navigate the medical waters knowing we all understand what you are going through here.
Chris
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Kitkit, Did you at one time have breast cancer? My very basic understanding is that once cancer is confirmed outside the breast it’s considered stage 4, or metastatic. The approach changes from curative to stabilizing or shrinking tumors because once the cells are in our bloodstream they can reappear at anytime. I was recently diagnosed as stage 4 because a lesion on my liver (9mm) was biopsied and confirmed as cancer, along with (at least) one positive axillary lymph node. I also have a lung nodule that was not biopsied but will be watched. So I went the same route as you, expecting chemo, surgery and radiation and everything changed once the liver lesion was discovered. I’m sure others with more knowledge will offer their insight also. It’s certainly not what any of us would have wanted, yet here we are. Ibrance and Letrozole have been been ok for me so far, but I haven’t had any follow up scans yet to find out how I’m doing
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Pat G Mc.. Are you out there? I was going to send this private messenger, then I thought what the heck maybe some of the other might want/need to know.
Received my first wig thru Amer.Cancer Society for free, I felt so blessed. So they said I'd need special combs, brushes, shampoos, liners, some band to go around my head to hold it in place,, etc. Geesh, it quickly got expensive.
Would you kindly tell me which items are positively needed to take care of and wear a synthetic wig? Right now, it's sitting on a large Mason jar. hehe Thanks a lot,
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Snooky, I bought my wig locally and in the shop she used a wide-tooth comb. There is a conditioning spray I use on it daily and wash it once a week with wig shampoo. Both are made by Jon Renau but there are others. To keep my wig on I use some sticky stuff called It Stays Roll-on Body Adhesive. I roll it over my head and put my wig on and it holds pretty good and it comes off with water. I’ve never tried a wig band but I’m sure it works.
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