Ibrance (Palbociclib)
Comments
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Karen I'm so glad you cleared that up. I was SO sad when I read your original post.
Pat, my dear Pat, how do you always manage to put a smile on my face. 😊
FYI last week I marked my third anniversary — in the hospital. The same hospital I was rushed to three years ago when I collapsed from my mysterious illness. Which was eventually diagnosed as MBC as you all know. Soo strange and unnerving.
I'll update you all over the weekend.
Love,
Penny
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That's interesting Curious. More options to help delay progression is a good thing.
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Hello all
Well, I just put in my order to have a 2nd batch of Ibrance sent to me. MO and I are sticking with 125mg as bloodwork after 2 checks mid cycle and at the end during my 1st cycle came back good. Still have sores on tip of tongue and 1 in my mouth at the back. Going to swish more: warm salt water, biotene, alcohol free mouth wash, yogurt and also going to try Colgate Peroxyl mouth rinse one of my early stage friends on here suggested. MO mentioned magic mouth wash if all else fails, but do what I want first and if no success, call her and she'll get a script for me. Sigh, while physically tired (fatigue from AC-T) chemo has never really left me, I still haven't been able to relax enough to get good sleep at night or even a good nap. It may sound silly but I pray for Ibrance fatigue to hit me soon, so maybe i can sleep away the things i feel inside. Every morning I wake up startled with a electrified feeling all over my body, its been that way since my first sets of chemo happened and has continued since then, it may be a tad worse now. It's followed by tears and a "pulling of myself together". Another day to get through. I seek to laugh, hear others laugh, and laugh with other people, so i will feel something other than sadness. If i don't laugh, if i don't fire up my wit to hear someone else laugh, i'll cry. I was happy I got to see my MO for more than 5 mins this last time...I am reminded how much I like her when i get that time with her. We are moving to once a month appts now: blood, zometa, see her all in one shot so i am not there all the time anymore. I'm happy for that. I hate infusions chairs, blood pressure machines....saying my last name and date of birth....Congrats Jen and Denny for many years
Karen, hoping for good scan results for you at the end of the month
Philly, you had asked if anyone was dealing with memory issues. I want to answer a big YES to that. As someone who before cancer had a photographic memory that was scary sharp and accurate, I now need a calender, alarms etc to remember upcoming events and things i need to do during the day. Its a drastic change for me and its been hard to take sometimes, when i'm sitting there talking with someone and my word recall just vanishes. Conversations feel awkward for me sometimes. Not just the memory issues but how conversations go once Stage 4 Metastatic cancer comes up...not many really know anything about it.
Pat, I love your humor and your attitude, never stop or apologize for it
Candy, I know your a cat person, I thought I might include another baby pic of Violet for you
Enjoy Take care ladies
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Pat, I love your humor, too. No apology necessary and please don't stop. It makes me smile.
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IntotheLight - sorry to hear about muscle cramps, they seem to happen at any time and can be very painful. I used to think it was Tamoxifen (no longer taking that), and upped the magnesium I was taking, which really helped. Magnesium Glycinate seems to work best for me, there are many formulations, and I have only tried a few. Also tried mg citrate and mg malate. Be careful of taking too much, loose stools. After switching to Arimidex and Ibrance, I would still occasionally get cramps, but 400 mg/day seems to keep them at bay. I am active, so do not think it was lack of activity. Staying hydrated also helps.
Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine,now just potassium; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while. New multi 11/2019 at recommendation of ND to replace all the individual ones. Found I needed more Magnesium than the multi provided for muscle cramps. Also taking additional D.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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Rada/ I know how it feels not to get a good nights sleep. I finally found things to help me sleep a solid 10 hours.
Melatonin. I take 20mg a night. But you might want to start at a lower dose.
Trazodone 50 mg, prescription. This is an anti-depressant but, is prescribed as a sleep aide in low doses. This has been magic for me. Ask your ONC about it. You DO NOT wake up feeling drowsy
Hope this helps.
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BlueGirlRedState, thank you for such a complete answer. I do walk when I can, take extra vita D and magnesium. I drink a tumeric tea but could add more with food. I don't do a lot of other supplements other than a multi-vitamin. I have never discussed this with my onc but I have a long list this time
I also need something to help me sleep. It is affecting my day more but this has also been a rough month. Had a scan this morning so now I wait.
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snooky, thank you for your reply. I've run through just about everything unfortunately - ambien 10mg has been the only thing that's been able to give me 5 hrs. I tried ativan at night, nope, tried trazadone 50 and 100mg, that worked a short time, melatonin nope, ambien 5mg, nope. I wonder if it just might need to be the passage of time and settling into things, even after my diagnosis ( initial early stage ) I had time before chemo started and after a week of no sleep i slept normally....then chemo started and have never been the same. I honestly think the chemo did something, because I've been through alot of crap in my life and never had a sleeping problem last longer than a couple days, not as bad as a cancer diagnosis, or a Stage 4 diagnosis, but bad and i still slept...its just different now. I can relax myself, but not enough it seems for my body to kick in and sleep once I close my eyes. I can lay there relaxed in bed with my eye closed for hours and nothing happens...unless I take something...ambien 10mg. It really sucks and its my biggest peeve outta all this. Its so much easier to tackle things with a clear head, being able to rest...Ive been in hyperdrive since July of last yr with no foot off the gas yet...I think I'm just plain scared...worried that because things have happened so quickly means what I have is stubborn and aggressive and maybe even resistant to further treatment. Maybe i'm thinking too far ahead but i feel like i don't have a reason not to be too concerned yet.
I was watching a clip of Bill Engvall today to get a daily dose of humor in, he was discussing the side effects of percocet. I thought it kinda applied to Ibrance in a way. That Ibrance is latin for "We've shoved a cork in your butt and superglued your cheeks together"....felt when applied is very accurate, for me at least, any chemo I've had my body went that direction. Light Prune juice has a prominent place in the refrigerator now. Gas, constipation and sleeplessness. Welcome to cancerland!
Intolight, hoping you get news soon, the wait is awful, i know
This weekend grocery shopping and church. When I'm out and about, and not at the MO, just doing normal everyday things helps me with coping. Also being around people and just feeling like one of them. I have a couple house organization plans in mind too that hubby will be helping with - afraid of lifting anything heavy on my own. I'm also going to attempt to make my first cauliflower pizza next week, just need to get the ingredients. I've never had cauliflower or a pizza with a cauliflower crust but there is a first time for everything and no shame in giving some new things a whirl
Have a great weekend ladies!
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SandiBeach...my heart went out to you when I read your post. I think most of us here if not all have felt that way often. I'm glad you had a better day shopping with your daughter.
PatgMc...please don't apologize. When I read your post it made me smile and gave me that hope that we all miss from time to time.
It's so sad to hear of Muddling Through's passing. May she rest in peace.
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IntoLight....praying for good news0
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So sorry to hear about Muddling Through's passing. This is sobering for all us.
On the other end of the spectrum, my wife got some very good news today. She had her initial scan in May. There was a subsequent scan (done somewhere else) in September. Although it appeared there was some shrinkage in some tumors, we FINALLY got the results of a radiological comparison which showed "improvement in all nodules". Her MO was thrilled with these delayed results as were we. She's doing well on Ibrance/Letrozole and her MO today said she was hopeful my wife could have "many years" on this treatment (probably a little too early to celebrate that one -- but certainly encouraging).
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Aaaww Mike that’s justgreat news!
Radagast, thank you for the good scan wishes
PatMcg... never stop being you.
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Great news, Mike!
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BLMike, put those Ibrance dancing shoes on and celebrate.
''improvement in all nodules'' and "many years" on this treatment'' ; comments like this from normally conservative/reticent oncologists is superb to hear, congratulations.
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Congrats on the great news Mike.
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Mike, it's never too early to celebrate! I'm so thankful your wife has had you encouraging her on this Ibrance dance! My Mike and I will celebrate your success and thank God for it!
I know your love and support are every bit as healing as the drugs. I see that in evidence here every day.
Love to both of you from PatGMc
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Thanks all. I know how much I like to hear good news from others.
Thanks Pat. Look, I'm just scared here. I'm like a drowning man trying to grab any life jacket thrown my way. In this case, her MO threw us a nice life jacket today. I'm not sure how long it will stay afloat, but I'll use it to stay afloat for as long as I can!
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Airlinegal and Radagastrabbit, thanks for the prayers for good results. I will hold onto them. I struggled this morning to get up and make it to the scan...never had trouble before. I kept having to lie down after my shower, and now my pillow is wet. But I at least got dressed, the new scan place was fine and after a good lunch out afterwards with my DH, I am doing ok now. I just have to make it to Wednesday (or a positive phone call before then from my onc.) One day at a time!
Mike, doing a happy dance with you. Love good news!
Pat, I don't have the ability to write with your sense of humor, but I do laugh a lot. Thanks!
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IntoLight...thoughts and prayers are with you for good results.
Mike...that's great news!
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Hello all.
Radagast- Just want to smooch Violet !!!!! What a pretty baby !!!!!! Your plans for weekend sound like mine--- grocery shopping and church. Boy, we know how to party !!!!!
Penny- Hospitalization? What happened? You ok now?
BLMike- Woohoo on the good scan report.
Intolight- Prayers for good scan results for you.
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Hi everyone. I want you to know that I love you all. I read this post and a few others daily. I laugh, cry and feel like you are all my friends. I write back to everyone in my mind daily. Sadly, actually writing for me is not something I enjoy, so I will probably remain more of a reader. I always feel bad for not contributing or supporting much when you all share and give so much to me.
I wanted to share my experience of progression and remaining on Ibrance for others who may face progression. I started Ibrance with Letrozole on 2/2018. I had one small 9mm liver met which I had ablated that same month. My liver has remained clear since. I got CT scans of my liver only every three months for 1 year. On 2/2019, I had my first annual, follow up PET/CT scan. My liver was still clear of mets; however, my doctor informed me that my lung mets had grown. Ummmmm, what lung mets!?!? It turned out that I had 3 metastatic lung nodules all along. On my first PET/CT, I had 3 lung nodules with the largest one 2.5mm in size. I had 2 cancer centers look over my original scans but neither noticed the nodules. I guess that is a very small, insignificant size. With this second PET/CT scan, my doctor was now able to compare the 2 PET/CT scans. The original lung mets had doubled in size which is scary but, of course, they still remained small with the largest met now 5mm. As with any type of progression, my head swimmed with thoughts. When in the past year had these lung mets doubled? I have grade 3 tumors, so did they recently double and were they about ready to double again? Or, had the lung mets doubled slowly over the past year? I will never know the answers. My onc and I decided to wait 2.5 months to rescan while I stayed on the Ibrance and Letrozole combo. In that time, the 3 lung mets grew 2 mm each. Still small buggers but definitely a progression.
I decided I wanted to stay on Ibrance and switch from Letrozole to Faslodex. My hope was that I had progressed on Letrozole and that Ibrance would still work for me if I took it with Faslodex. Yesterday, I had a follow up scan. My lung mets have remained stable these past 6.5 months with the Faslodex and Ibrance combo. I am pleased to still be at the Ibrance dance, and I hope my experience may be applicable for someone else. ~Kar
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Thank you for sharing your experience, KarPC. I am here every day but mostly read as well. Nice to know I am not alone in that regard as well.
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KarPC, I am definitely mentally filing your story. My MO and I talked and feel when I have progression, I will stay with Ibrance and switch to Faslodex. So it looks like with your revised combo, you are 6 months with stable lung mets! Wonderful.
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Kar, that's just wonderful! Congratulations to you and your flexible doctor.
I love knowing that as Ibrance Dancers and others find creative ways to take these meds, the world of oncology learns something from each Pioneer that helps the next person!
It's how the world of MBC will continue to evolve until we all get well!
Love from PatGMc (Sitting here imagining my DNA being straightened out one strand at a time by this magic Lynparza! Holly, you good?)
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Rada love the photo of kitty....miss my Bootsy boy...he was 17 when he went over rainbows bridge.
Mike great news for both of you...my husband is right there with you
Kar.....stay strong
Pat....bless you
IntoLight...Every so often will have a month where I can barely put one foot in front of the other...mentally and physically I am exhausted at times.0 -
KarPC- I too am mentally filling your information. My MO had mentioned in the past moving me to Ibrance/Faslodex 2nd line when progression. When my CT in Oct showed possible progression she then mentioned a PARP. The PET in Nov shows stable, so no change in treatment for now. But I do want to look at Ibrance/Faslodex next when progression DOES occur.
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Good morning, I am a lurker, don't follow daily but appreciate the information, hope and love amongst the group members. With that being said, I guess it's time to jump in the pool rather remain in the shallow end. I dipped my toe in the water with two other members, which was responsive and encouraging. In August 2019, I was staged with de nova metastatic breast cancer. First line is I/L which is fairly common in reading these posts for HR+/PR+, HER-.
In order to compliment my treatment options, I've read the Jane McLelland protocol with great interest. So I researched and read several group members posts, here is were I am stuck for off label (remember this is Ibrance and Letrozole specific), I was going to start on berberine. I read "berberine, may induce CYP3a enzyme so that the body will break down Ibrance faster and thus decrease the benefits gained from using these drugs" This warning is on the ibrance drug interaction label "------------------------------• CYP3A Inhibitors: Avoid concurrent use of IBRANCE with strong CYP3A inhibitors. If the strong inhibitor cannot be avoided, reduce the IBRANCE dose. (2.2, 7.1) • CYP3A Inducers: Avoid concurrent use of IBRANCE with strong and moderate CYP3A inducers. (7.2) • CYP3A Substrates: The dose of sensitive CYP3A4 substrates with narrow therapeutic indices may need to be reduced when given concurrently with IBRANCE. (7.3).
Then I was going to look into quercetin (off label COC protocol), then I read " the quercetin may decrease the excretion rate of Ibrance which could result in a higher serum label.
Hence I am left with two other off label drugs that I have not researched yet. Just wondering how others rationalize their supplements to move forward with their informed choices... I do believe it's going to take thinking outside the box but don't want to jeopardize my current I/L treatment. SO here is where I am at with this journey. As a newbie only taking the calcium and vitamin D supplements for the Xgeva, as recommended by the MO.
Appreciate any feedback. After a few cups of Coffee (due to severe insomnia), I apologize in advance for typos....
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Hi Tinkerbell,
I see a Neuropathic doctor at the cancer center who helps me determine which supplements I should or should not take. I also use the https://www.mskcc.org/cancer-care/integrative-medi...
He has also told me to stay away from berberin. There is a CO C protocol thread also. There is also another thread that Nicole started which lists other supplements that we need to avoid while taking I\L. I hope this helps.
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Tinkerbell1, welcome. Have you considered metformin?
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Thank you Simone80 and Husband11 for your response. Perhaps I should look into a Neuropathic doctor . At this point it couldn’t hurt, right? Husband11, my MO will not prescribe metformin unless clinically indicated. This is where my problem lies, Do I consult with COC? Try the off label route that matches COC, go to a Neuropathic doctor or integrative Oncologist, or do nothing, meaning stick with my MOs plan. So many paths, not sure which is best but don’t want to make it worse.
After ruminating about the above then I worry about diet (estrogen driven foods, make up, plastics, alcohol , etc),
What a quandary.... bless your heart for all of you that can make sense of all of this.
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