Ibrance (Palbociclib)
Comments
-
Candy - that is terrific news! Live the day, but yes, we all know the mind games.
I take 600 (unit) of calcium. I also take 2000 ( units) of D3. I take a Flintstone multi-vit with my girls at night. After a 3 day wait, I am on cycle 2 of Ibrance. Last Wednesday I was at .84 so the MO held me until labs todwy. My neutrophils "jumped" to 1.12. So in 15 days, I bet the MO will hold me again because I have a feeling I will fall under 1.
0 -
-
I will soon start month 29 (cycle 31) of Ibrance/Letrozole. Today's Bone and CT scans show no new metastatic disease. The liver lesions are dead, according to my MO. My CA 15.3 slightly increased, but will continue to monitor that.
So I continue on Ibrance 100mg/ Letrozole with history of liver metastases. Just amazed at my body.
0 -
Good article Cure-ious0
-
I've talked about Laughter Yoga and Laughter Therapy on here before and I'm such a believer, having led laughter workshops for years.
Here's a link to a Joyology Webinar for you. Sometimes you can fool your body and mind on a sad day and that's a very good thing. These techniques are especially helpful for Scanxiety relief!
Link below.
Cure-ious, thank you for another good article. I'm thankful for your commitment to forwarding these to us.
SandiBeach, I'm doing the Long Lost Liver Lesion Dance with you, celebrating your amazing body!
May all of you having scans this month get the same kind of good news.
Love from PatGMc
https://connect.xfinity.com/appsuite/#!!&app=io.ox/mail/detail&folder=default0/INBOX&id=10561370 -
Candy and SandiBeach: congratulations 🎊🍾🎈🎉 on your scan results!! that is the best news to receive! The anxiety of waiting for scan results when one has this disease is just too much! Hard to imagine that we can actually live pretty normal lives with cancerous lesions hanging out in different organs. Yeah, no big deal!
PatgMc your posts always make me feel warm and loved. Thank you for your continued upbeat and optimistic shares. They truly do help me keep my head above water!
Cure: great article! It really is becoming a thing that being diagnosed with metastatic cancer is no longer a death sentence but is a chronic disease. It has taken me so long to wrap my head around this concept. Also hard when we are witness to others dying from MBC. All I can hope is that the numbers of people living with MBC for long periods of time keeps increasing more and more every month! Now they just have to figure out how to care for us!
Love and hugs,
Philly
0 -
Hi everyone - just weighing in to share in the joy of results from both Candy and SandiBeach!! Woot woot! Please know I am celebrating with you and praying for the rest of you.
Cure-ious - I love this article. Thank you so much for sharing it. While I try not to be unrealistic, I do think of myself as having a chronic illness and I have from the beginning. It helps me to face each day. I also try to make decisions on future- facing topics with this concept in mind. For example, I have some very expensive dental work pending, as a result of a multi-year process to address my TMJ jaw misalignment that I started a year before my MBC dx. I have now reached the stage where the appliance I've been wearing has finally aligned my jaw and now it is time to reposition my teeth to match my new bite/alignment. This means braces and likely replacement of 12 - 15 crowns and perhaps also removal of my wisdom teeth. Does it make sense to do this? Maybe not. But I'm doing it anyway! The only person I discussed this with is my husband.... should we really spend all of this money on my teeth at this point? His response was - absolutely we should. So I'm doing it.
I will see my MO today for my quarterly visit (no scans as we are doing those every 6 months and I just had them in Jan). I will get his approval on my jaw work but otherwise, I feel pretty good going into today's visit. :-)
Hope you are all able to enjoy some sunshine today!
Love to all,
Lauren
0 -
Thanks Cure-ious! Love this, “the new normal could easily mean 10-plus years of quality living with a chronic disease.“
0 -
Thanks Cure-ious. This sums our treatments well. It also helps as I try to explain the meaning of my targeted therapy to people such as my dentist, etc., who are unfamiliar with the regimen. Your unceasing research is amazing!
0 -
Hello, all - does anyone have any experience with "Immature granulocytes"? This is the first time mine were out of range - apparently, range is 0.0 - 0.6, and mine are 1.3%. I started looking it up online, and got varying answers as to why the number would be elevated, from an infection to cancer in the bone itself. Yikes! So, of course I stopped looking, and sent a message to my oncologist. When I saw her yesterday for blood work (she had the results, but they weren't posted yet), she said everything was fine, but I figured it couldn't hurt to ask for clarification...
0 -
Ciaci, I don’t have an answer for your question so,will be interested in the answer.
The nurse called to say my wbc count has improved enough that I can start back on the Ibrance now at the lower dose of 100 mg. Happy about that. Blood work in a week to check the wbc’s again. I bet the multi vitamin helped. plus I took it easy, upped my vitamin c intake by drinking oj and snacked on almonds. Maybe the multivitamin combined with lower dose Ibrance will prevent the wbc s from taking another too low nosedive. We’ll see.
I could swear I’m sleeping a little better since Imbegan taking the multivitamin. Sometimes I’d waken in the middle of the night and not be able to fall back sleep for a couple hours, and I really haven’t had that problem this week. Glad about that, too. The multivitamin is the only thing I can figure is influencing the sleep.
0 -
Hi all; It's taken me a while to catch up on all the posts. We've been very busy here and I've been watching my very active grandson!
I remember a while ago the use of Bactroban cream rubbed under our nose was recommended on the site to help prevent bacterial infections while we're out in crowds. Just a reminder for those who want added protection when shopping etc.
All is very good with me. I saw my onc last Thursday and he said he expects me to be on this treatment a long time. I'm just ending my first year on I/L. My CA125 was down to 13 (testing for my ovarian cancer but also seems to work for my lung mets) so we're both happy and bloodwork is ok too. He is involved in immunotherapy via some doctors in the US and said that if anything was needed or would be useful for me he would make sure it was available. I really trust this doctor and have total confidence in him so I'm feeling very relaxed. I'll get a scan in a month or two.
As far as my fears and concerns about my diagnosis, I've always felt that I am the luckiest unlucky person I know. When I was diagnosed in 2004 I was originally not even going to be having chemotherapy as I had negative nodes. Luckily during my appointment my very experienced oncologist found a 1 cm tumour in my supraclavicular node placing me stage 3C and I was immediately put on A/C Taxol, radiation, arimidex. Then as I was reading about herceptin I asked to be tested for her2 (it wasn't automatic in those days and herceptin was totally new in Ontario) and to our surprise I was positive......so I also received herceptin. Lucky, lucky.
Then when I was diagnosed with ovarian cancer in 2015 it was stage 1. I'm told that very seldom happens. I had reacted to one swipe of blood which in the end was likely caused by the arimidex but my doctor, knowing my history ran ultrasounds, etc. Lucky me again.
Now being diagnosed in 2018 with MBC, Ibrance is available. Lucky unlucky me once again! So, I really don't worry too much about how long I'll have as I see immunotherapy coming down the pipe and I have a very good oncologist.
There is one other aspect to my life that gives me the greatest comfort.....my daughter is wonderful and with me every step of the way. She is truly my rock and I am watching out for her like a hawk and glad she knows all my doctors well for her sake. I also have a very good girlfriend and either my daughter or my friend attend all of my appointments and treatments with me. Never go alone I advise everyone.
So, try to remember how very lucky we are to have MBC in this age of revolutionary medicine. My grandmother died in the 1930's likely of ovarian cancer and she was given iron pills......
God bless and love to you all,
Cathy
0 -
Hello All,
Candy I absolutely empathise, great scan results, but the ever hanging THING is there, which we can’t remove - but we can push to the side. Your phrase ‘when the other shoe is going to drop’ is just how I feel 😬. Can’t live with it in my face all the time, but do need to recognise it’s there and SCARED😰
My thinking is that being SCARED constantly is just exhausting and I have enough of that with the drugs. So I’m taking the other ladies advice and just LIVING, even if that’s just the ‘boring’ stuff.
Everyone is so supportive here and I find it incredibly reassuring that we have articulate, intelligent, caring, funny and sensible women here.
By the way been taking a B complex supplement and Glucosamine for a few weeks now. Sore hands gone at least for the moment! Pee bright yellow 😱 (ehhh maybe too much information???). Bloods today sooooo close to being at threshold for next cycle, that they want me in tomorrow for another run after months of being delayed. Connected? 🤨.....No idea but if not doing any harm will keep at it for now 😊
0 -
Seaway, yes, you are a very lucky unlucky person! I like how you described all those things that worked in your favor when other things were not.
Also, you are right, we are fortunate that we are dealing with mbc in 2019. Just several decades ago bc was only mentioned in whispers and never mixed company. And what about those radical mastectomies that disfigured women? Even when less evasive procedures came along that were proven just as effective as the radical mbx, some doctors actually refused to offer it to or tell their patients because they didn't make as much money doing the lesser surgery. Isn't that beyond ghastly?
And as a tie-in to what Karen mentions, another reason we are fortunate to be dealing with this “now" is we have an internet forum bringing us together for support and information. Imagine not having such a large group of women all walking this path, sharing our experiences and knowledge. It makes me believe that one factor of many contributing to women living longer with mbc these days is the valid information, resources, advice and support found on this forum and others like it
0 -
Hey ladies - I saw my onc today and all is well but I did discuss with him that I've had these recurrent infections monthly, linked to my Ibrance cycle, for the past 7 or 8 months, requiring an antibiotic nearly every time. He suggested that we check my iGg levels (immunoglobulin) and see if my immunity is low. If it is, he can order and IVIG infusion to help boost my immunity.... So I went off to get my blood work and my Herceptin treatment and at the end, I got my blood test results and my iGg level is indeed low. I'm sure the office will call me tomorrow to disucss getting this IVIG infusion. So, I am familiar with this because my mom had leukemia and we were often checking her levels and she would get the IVIG when it was low. Thus, I thought this might be a leukemia problem.... I have not heard anyone here talk about this and when I search iGg and Ibrance on google, I'm not finding anything.... So curious if anyone else knows anything about iGg or has been tested or told that you can boost your immunity with an IVIG infusion.......
Love to all,
Lauren
0 -
Lauren, I've had friends who had the IVIG infusions to boost their immune systems years after chemotherapy, especially people who had lymphoma. They called it "getting Gamma" and always spoke of having more energy afterwards so, hopefully, that will be a bonus for you. I remember that they had to be pre-certified with insurance for these.
Just a thought....maybe it's the Herceptin/Ibrance combo that causes your problem. Probably not a lot of people getting both so it may not have become a documented thing.
Love from PatGMc
0 -
Lauren, thank you for bringing this up! My wife seems to have the same problem with infections at the end of most cycles. You make a compelling point about blood diseases. She had lymphoma 13 years ago so maybe low iGg levels could be the answer to.her specific situation.
Since I am already addressing you, I would like to ask you if your TMJ has prevented you from getting Xgeva regularly. Are you aware of that condition making you more prone to ONJ? My wife has had sporadic episodes throughout her life but she treated them at occurance by using muscle relaxants. Curious to know if you were more informed given your more severe case. (Dont mean to pry, so obviously feel free to not answer if you deem it inappropriate of me
0 -
Pat - I love it that you have so many friends! Thanks for the info.
Daniel - I didn't realize that your wife has gone through Lymphoma in addition to MBC. Bless her soul - that's just unfair!
So I do have an iGg update.... the ref range for this test is 751 -1,560 and mine came back at 661. My MO called this morning and said that 661 is "not low enough" to warrant the IVIG boost. Typically insurance requires that it is well below 400 before they look at that solution and he agrees with that approach.... so while we have some explanation on my immune deficiency (in addition to my dropped white counts at the end of each cycle), we need another path to address my recurrent infections. Options are: alter the dosing schedule or lower the dose. I'm generally against these options (recall my perspective is typically to maximize treatment), but he convinced me this morning that he wants me on these drugs for the long haul and he doesn't want to see me land in the hospital with a serious infection, which could mean coming off of the drugs completely for a period of time. So I need to search my soul, do some research and decide which option I want to try. I have an secondary MO (same group but the local MO who administered my faslodex shots) who can weigh in next week, as well, when I meet with him. I did ask, Pat, why my levels would be low --- is it Ibrance, is it the Herceptin combo, unrelated and perhaps hereditary, maybe it's always been this way.... and since we have no other data points and none of this has been studied, we honestly don't know. All of those are reasonable explanations but he suspects that Ibrance is the culprit. He doesn't think many MBC patients are being tested for this because it is typically only done with blood cancers. He's a hemotologist/oncologist so it was just a hunch to test it.
I'll let you know what I decide after I research and meet with MO #2. If anyone has thoughts or recommendations, I am open to hear them!
(Daniel - I will respond separately on the TMJ/ONJ piece).
Love to all,
Lauren
0 -
Daniel - no question on this board is a "pry" for me - I am an open book, especially here!!! So................ yeah, my MO has been hesitant to give me a bone strengthener since dx, specifically because I have TMJ... so while the OMJ risk is relatively low, my risk is higher with TMJ. He did finally agree to it in January so I had my first infusion of Zometa (he says Xgeva has a slightly higher incidence of OMJ so he recommended zometa in my case) in Feb this year. We are doing the every 6 month "osteoporosis dosing schedule," which is the lowest dose. Right after my first infusion, my dentist advised that my active degeneration was now "inactive" (they did a jaw CT) and thus it was time to consider next steps here for repositioning my bite. The Orthodontist I met with wanted a letter from the MO with "approval" to move forward and to manage coordination with my meds. We spoke about this yesterday. MO agreed to send approval letter and said that we need to manage zometa to a 3 month window before or after we install braces or do any other invasive procedure. Ibrance only needs to be stopped in the case of a surgery (likely I will need to have my wisdom teeth out as a part of this) and needs to be managed to a 2 week window, before or after any surgery. What I will likely do here is discontinue zometa for some time until all of this is sorted. My MO doesn't think I need it in the first place so it probably makes sense for me to stop it through this period. Let me know if this addresses your comments and thanks for your care and concern!
Love to all,
Lauren
0 -
Lauren, I've been meaning to tell you that I think you are totally justified in having all the dental/orthodontic work. Of course you are.
Also, why are you so against lowering your dose of Ibrance? Are you already on a lower dose than 125 mg? Lots of us have done fine on 100 mg and/or 75 mg. I just finished cycle 35 on 75 mg. There's no extra courage involved in taking the higher dose.
Karen, it's been a few days but I remember your comment about the bright yellow pee. When I was taking a B complex, mine did that, too. I was taking B6 and B12 separately but wanted to cut down on the sheer number of pills. The B complex had those and some other B's. Yup, pee turned bright yellow. And I had to pee more. So I went back to just B12. I'm trying to relieve my neuropathy symptoms but none of them really make any difference. I like to do at least SOMETHING my doctor advises, so I keep taking it.
0 -
Hi all. Question for you. We know the Aromatase Inhibitors cause pain, and I know some have posted about hobbling around like an old lady. My Left heel is giving me fits. I did not mention this to my MO the other day---spent the time talking about my latest CT results. It feels like I am walking with a rock in my sock/shoe. Like I can feel the bone banging against the floor. I hobble around and when I am sitting it has stabbing pains run through the heel. Both feet hurt but the Left one is worse with the heel being the issue. I am slow in moving when I first get up and it has been that way all the time I have been on Letrozole. And my feet have hurt all along also. But the heel issue is new the last couple of months.
What does your A/I pains feel like?? Your feet pain??
Hugs from this 48 year old hobbling lady in Illinois.
0 -
Thanks Jaycee.. at least I know I'm not hallucinating about the bright yellow pee!
Candy, I've also had pain ( PAAAIN!!) in feet, hands and hips intermittently. ( I do not have bone Mets as far as I know.) It's the Letrozole we think.
My experience is that this comes and goes.... like a flare up and cool down. I was very worried that this would be cumulative and gradually get worse but that, for me, doesn't seem to be the case. Now I'm thinking, ride it out, take care of the bit that hurts as best you can and eventually it will calm down. I do make sure to tell my team.... yesterday my nurse practitioner ( who is great) greeted me with ' OK which bit hurts today?' And we both laughed when I said ' Ocht Everything... we're just getting old', meaning her too as she’s about the same age as me.
Actually today, nothing really hurts, so I can complain about just being tired! She knows full well that I'm not a complainer really, so we take this chat all in good part. I know if I was really struggling she'd be right on it. All about the relationship with your team I think.
Heel pain could possibly be an inflammation of the heel pad? Had that before and very painful. Try elevating your foot and icing your heel (frozen peas under a bit of kitchen paper) for no more than 20mins at a time. Won’t do any harm if it’s a bone thing too. And tell your team - which I know you will anyway.
By the way I’ve beena PE teacher for 30 odd years so had plenty practice with sore bits!
0 -
Candy, I'm thankful for the many, many friends I've had and have because of this cancer journey. They've taught me a lot about the side effects from AIs, especially letrozole, so I've not been dependent on what drug companies report about side effects. They may say "aching joints" in their literature but we know some people experience far more than that.
I can assure you from my experience and that of so many others that heel pain is often caused by letrozole. The symptoms may sound like Plantar Fasciitis but I finally knew this was a letrozole thing when it completely resolved about 6 weeks (if I remember correctly) after stopping the drug. Up until then I had to stumble across the floor each time I stood up, especially first thing in the morning. I also had a problem with ligaments in my left leg and in my right hand. Those problems cleared up quickly after stopping the drug. (I had even retired due to the problems.)
When I started Ibrance I elected to try Arimidex instead of the recommended letrozole. I know some of you were warned not to take Turmeric for Joints but I knew I had to be proactive or I would never continue the drugs. Quality of Life is a great big deal for me. I knew I could just sit and, therefore avoid lots of the foot pain but, being an artist I wasn't prepared to lose any use of my hands. I'm guessing Turmeric hasn't interfered with the Ibrance since I'm over two and a half years into this and it's still working! I have some aches but nothing like those bad old days.
My best to all of you as you figure out what works for your life.
Love from PatGMC
0 -
On the topic of other side effects, I've been having some weird breast and deep underarm twinges. They're not exactly painful but maybe mild sore feelings that come and go. I was diagnosed de novo, so no surgery to trace back to. I've had the twinges in my non-cancer breast too. Anyone ever have something like this? I don't see my onc until next month after my first scans. How worried do you all think I should be
0 -
I too have the terrible heal pain! Ouch!! It stinks!!
It started on the left foot and now I have it in both feet.
Letrozole has definitely caused me some serious aches and pains. They do feel better with exercise, Tylenol and hot baths.
I just had some turmeric in my veggie stirfry that I made for dinner
0 -
Rosie, I have had weird pain twinges in both breasts off and on, and I am approaching year 3. Doesn't seem to follow any pattern. I too was dxd de novo with no surgery and no original breast tumor. So far I have had nothing new noted in scans that would relate to it although I get scanned next month. Mention it when you go in, but I wouldn't panic. I have been having a lot of back and shoulder pain the past couple of weeks so I am looking forward to my next scan to see if it means anything. Again, no panic as the pains for me move around and usually come to nothing.
0 -
In January I started with itchey underarm on the non ca side. Then with pain that would wake me up. Lidocaine took care of it. Mentioned it to MO, ordered PET/ct. 3 nodes lit up. After surgery 3 weeks ago, was told that 7 of 10 nodes taken were positive. With micromets. So mention it, and be a pest if necessary.
On the Arimidex threads, some of the ladies there think non drowsy Claritin helps with the foot/bone pain. Check with your MO, wouldn’t hurt and they think it helps.
0 -
Thank you, Into Light. It really helps to know I’m not the only one who has this side effect. Good luck to you with your next scan, hoping it’s all good
0 -
Rosie, I've been having intermittent pain in my breasts, ribs, and stomach area since my diagnosis two years ago. My oncologist said it could be from dying mets. I had a PET scan a week ago that didn't show any uptake, so I've stopped worrying about it.
0 -
Thanks all for the suggestions for the heel pain. I too think it is the Letrozole. I don't want to switch AI's since my scan shows this combo is keeping things at bay. Some pain is a small price to pay for the cancer staying stable. So off I go hobbling to start my day.
Interesting though----Why suppressing estrogen with AI's would cause pain in the heels of your feet??? What is scientifically going on in the body to cause THAT side effect? Anyone here have any ideas or read the reason for this? Cure-ious- any suggestions?
0
