Ibrance (Palbociclib)
Comments
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Zarovka - Have you ever looked into "Ubiquinol"? I take it because it is the version of CoQ10 that is better absorbed by our body. Especially after 50. I learned of it on Dr. Joseph Mercola's website "Mercola.com" Maybe it will be something you would care to try.
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I actually do take ubiquinol. I take this stuff. I pay a lot of attention to absorption and bioavailability of supplements. However, it's a complicated topic and I feel even after a lot of study it's hard to know what is important and was is not. The supposedly more bioavailable supplements are always quite a bit more expensive and those of us who have gone the supplementation route are already spending a lot on supplements. I am not a huge fan of Dr. Mercola who I think is more of a marketing strategist than a researcher. However, in the end I did feel that ubiquinol was worth paying for.
If I had to drop a supplement, it would be coq-10/ubiquinol because it isn't super important for fighting cancer as far as I can tell. But it does seem to promote overall health and protect the heart, which takes a beating with all these drugs. Indirectly, it seems like it might help. So I do take it.
I finally broke down and ordered some magnesium for bone strength, muscle aches and for hot flashes. Quite a few people swear by it, and I need some help. I need another pill like I need a hole in the head, but I've recently ditched some stuff that wasn't doing anything, so I'll try the magnesium.
>Z<
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I also take co q10 that's highly absorbable and for me it's a no brainer since I also have cardiomyopathy.
I'm now on my last week of rd # 9 and while most SE's are not awful, the thing I'm having lots of trouble with is my mood swings. I can be okay one minute and then the next I'm crying. I know there are a lot of reasons for this, including lack of sleep, scanxiety (scan Oct. 7) , worry about lots of sh--. but I'm wondering if anyone else is noticing the mood swings getting worse the longer you are on this Ibrance / let combo?
Faith (in the future
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I've had far more anxiety the last 6 weeks than I did before that. Funny thing is this was after my really good scan in July. If anything I should have been feeling this way BEFORE the scan.... before I knew how I would respond.
Anyways, I don't know if it's because I have a little PTSD from the diagnosis, or if I'm allowing myself to "go deeper" and think more about my new reality, OR.... is it the medication? I really have no idea.
My oncologist said that chemically my body is completely different now - had tons of estrogen.... now none. Things like that. With chemical changes come mood/emotional changes. Not sure it's any ONE thing causing it, but yes-- my moods have been fluctuating more recently than before. Wouldn't mind getting that under control! Not easy for my husband and not easy for me either!
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Faith - I am on about the same schedule as you. Starting cycle#9 on sunday. The Ibrance side effects have disappeared but the letrozol/no estrogen side effect got really severe. No mood swings, but muscle aches and hot flashes. I am greatly improved after looking into every possible complementary approach short of taking estradiol. Look into acupuncture, exercise, yoga, homeopathic treatments, lymphatic drainage, and any of the supplements. It's ultimately the same thing I have been going through with a different manifestation. I am confident you can find some improvement in the treatments that support menapause.
That said, it's not just the drugs. Unprocessed emotions are the big issue with mood swings. There are any number of modalities to help work the emotions rather than have them pop up in weird and strong ways. If you have ever felt called to work with someone to dive into the emotions you have going on, this would certainly help.
I've been working weekly or every other week with someone on emotional clearing since diagnosis. The PTSD is real and can be addressed to great benefit. I guess I am saying: don't just dismiss this as drug induced mood swings.
>Z<
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<Z> and eelder, thanks for your replies. I definetly am thinking that some or maybe even most of this is PTSD. I probably need to see someone but have been putting it off b/c of the expense involved. Since I'm on Medicare, I don't think anything would be covered. I will probably talk to the social worker at my MO's office. I did talk to her once before and there are some things like yoga and other classes offered but they are all held at the dinner hour (5 - 7pm). That's just not convenient for me. I'm sure they are geared to working women. I just need to find something that's right for me.
Thanks again for your support, it helps to have a place to come to when I'm feeling so many emotions about all this.
Faith (in the future)
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I'm on Cycle 3, almost done. I had labs today and a new thing popped up - Anisocytosis +2. I tried to do some research on it, but I didn't find much in the way of explanation. Anyone have any insight on this?
I have scans tomorrow to see if Ibrance is working. Love those long scan days! At least I'll get a 3rd 32oz mug. Pretty soon, I should have a nice set!
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Wishing you well with your scan, Mzmerz!!
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Thanks for letting me linger at the Ibrance topic:
Re. PTSD - many years ago, I coined the term MMTSD - medical mid-traumatic stress disorder - for all of us who must keep getting back on the medical horse that threw us, then stamped up into the ground. But then it's time to deal with a new diagnosis, a complication, symptom, unwanted treatment effect or change, scanxiety or heading off to the office for another session of getting ground down again.
If we don't actively address and deal with the effects of MMTSD, we can end up the victims of poor treatment decisions. Denial works well in some cases, but probably not so much when avoiding necessary medical care.
And going into and through it resistant and terrified isn't probably the "spoonful of sugar that helps the medicine go down."
I so wish that MMSTD were actively addressed in all survivorship and oncology programs. Imagine - addressing and easing trauma before it compounds the damage of ongoing medical treatment for what becomes will become a lifelong medical condition.
Imagine!
Best, Stephanie
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Stephanie, MMTSD! That's probably a diagnosis that should be in the medical literature. It seems to explain things perfectly. I pray you can hang around here a long time. You have so much knowledge and empathy to share. Thank you for being here
All the best to you with healing thoughts,
Faith (in he future)
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I am so sorry to hear ofher passing. I am just about to finish my first round of Ibrance and Femara and she was my inspiration.
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i just finished my third round of Ibrance. After first month tumor markers went (CA 27-29) went down 60 points and now after 3 months went back up 60. Is this normal for Ibrance? Thanks for any info you can give me. Bar
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Barb312 - there is no data on Ibrance causing tumor markers to rise, but there is a lot of data on aromatase inhibitors causing tumor markers to rise. It's called a flare reaction and sometimes associated with the cancer responding to the AI. I am on Ibrance and letrozol and my tumor markers increased as the scans showed an extremely rapid decrease in tumor size, IOW a strong response to treatment. I don't believe anything but scans at this point. In fact, I take scans with a grain of salt, but that is a different discussion.
In general, the diagnostics we have are weak. Tumor markers the worst of all. I think I see a point to TM's once you have like 3 years of data on your own tumor markers. Otherwise they don't mean much, IMO.
Faith - I am not sure where you stand on religion and spirituality, but the most enduring peace comes through prayer and exploring your spirituality. And it is totally free. I've had the money to do various therapies, but the kind of recurring trauma we go through is really beyond our ability to deal with. If there is some spiritual community in your sphere that speaks to you, you might visit and explore.
>Z<
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Thank you for the info. I was supposed to start on 75 mg. next week because of fatigue. I just left a message with my onc. to leave me on 100 mg. My blood test are good, but I thought I was having too much fatigue. I am also on letrozole. I did great on faslodex for 19 months. No side effects at all. I got spoiled. It has been almost 5 years for me and I am so thankful. I remember years ago when they said 5 years NED and you are cured. LOL
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I agree with Z regarding tumor markers.... I don't think it's wise (good for our emotional state) to put much stock in them. I do believe that over a period of time (years) you can probably start understanding how YOUR TM's behave and therefore you mind find them informative from a diagnostic standpoint, but really I think scans are more reliable. And like Z said.... there are problems with those too! My oncologist does TM's every other month, but doesn't pay much attention to them. If they suddenly shot up for me (after a steady decrease over 6 months) then she might order a scan. But I wouldn't pay too much attention. The tumor flare thing is real and can affect them.... probably what's happening in your case.
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One thing I had mentioned a few months back was my continued hair thinning. No one else really noticed, but I sure did. Starting during cycle 3 I noticed my hair thinning considerably. Well, about 6 weeks ago I started taking biotin. Not sure if it's the biotin or the natural progression of things, but my hair thinning has slowed the last week or two (I'm on cycle 6). My oncologist did say everyone loses different amounts of hair but no one that she knows of has lost all of it. I was worried about losing all of my hair since it didn't seem to be stopping, but sure enough.... it has slowed- considerably. So, for anyone who has had hair thinning and is wondering.... this has been my experience.
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eelder, I too have had a lot of hair loss. I had a lot of very thick hair when I started Ibrance. I am on cycle 9 and I would say I have lost 75% of my hair. I have no bald spots but its super thin and looks damaged. I have been taking hair vitamins and biotin the entire time. Sadly it didn't work for me
I am still shedding, but not as much as I was because I don't have much too shed. I always feel a couple of long hairs fall on my arms and it still comes out when I lightly brush it. It is quite ironic as I did cold cap therapy during chemo in 2011. And although my hair thinned some, not nearly as much as now. Guess its just my bad luck. I know i t's just hair and Im glad the Ibrance is working, but I feel so self conscious. I am thankful for clip in hair extensions!0 -
Hi I am new to reading the post and making my first comment and question. I am on Ibrance and Femara since April 2016. Do think what you eat and don't eat important in building your immune system up. Such as eating no sugar, drinking no coffee because of the acidity, juicing, no dairy, no red meats and organic fruits and vegetables. What about essential oils? In other words trying to keep your body as alkaline as possible
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airlinegal - Anti-Cancer A New Way of Life really resonated with me because it's written by a doctor who had brain cancer and it has a lot wonky statistics and clinical trial results. It has diet recommendations, based on studies and data, as well other lifestyle recommendations. It boils down to eat as many raw fresh vegetables in as you can. Exercise is also really important and this books provides a lot of data on that.
Andrew Weil has boiled down a similar set of advice into a food pyramid which is simpler and easy to follow. He is a good writer and a solid physician. The relationship between inflammation and many chronic diseases is well documented in clinical trials of all sorts, as is the relationship between diet and inflammation. Dr. Weil is the expert on inflammation, diet and cancer/chronic diseases.
I am not a big fan of eliminating meat entirely because cancer patients need a lot of protein, but certainly you can get by without red meat if that is what your body wants. I have almost no interest in red meat at the moment, but I love eggs and salmon and chickent. The main thing is to listen to your body.
For myself, I am not super strict at the moment. I make sure I eat one big salad every day. I look for opportunities to include whole grains and lots of good lean protein. I get a fresh veggie juice in most every day. I don't eat after 6pm in order follow the 13 hour fast protocol.
I have an alternative doctor who believes in keeping your alkalinity low to fight cancer. He is looking at how to do this with drugs. But when I looked into the diets and the definition of "low-alkaline" food, I couldn't find anything definitive on how they decided that one food was low alkaline and another was not. I am willing to go pretty far off the beaten path to cure my cancer, but I don't feel this issue of alkalinity and diet is well understood.
All that said, we had a big family pizza night this evening. It was great. I am pickling in refined carbs and red wine at the moment and it feels great. Life is short, as they say...
Welcome to the discussion. Our lives are on the line and none of us has the definitive answer about what to do.
>Z<
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rpoole.... I know.... "it's just hair" but hey - I get it. It was getting to me too. All the thinning. It represented another aspect of my situation that felt out of my control. I agree it's great that ibrance is working and obviously we'd take that over nice, thick hair, but still.... it's all tough.
airlinegal... I can't speak for others, but I do believe there are things within our control that help treatment work better and help control the cancer. I started an alkaline diet the minute I was diagnosed. I gave up sugar (almost completely). I drink VERY little coffee (like one cup a week... probably the hardest thing I gave up). I try to eat solely organic or whenever possible. I have almost no red meat (mostly organic chicken or wild fish). I start every day with a green smoothie and I juice 2x a week (I'd like to more but I just can't find the time). I'm also on a truckload of supplements. Everything I've read about controlling and fighting cancer points to the need for an alkaline diet. My oncologist says people who do this "tend to do better." She feels it makes a difference. I do too.
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Z.... hadn't heard about the 13 hour fast protocol. Fascinating. I will be starting that tomorrow!
I also agree that balance is key too. I normally try to avoid gluten, but once in a while I indulge in deep dish pizza because I love it or a piece of good sourdough bread at dinner. I also have 2-3 glasses of good red wine per week. I know they say alcohol is a no-no, but every single doc I talked to said a little won't hurt one bit and if it makes you feel like you're living life, then I think we need to give ourselves those moments.
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<Z>. I totally believe in God and the power of prayer and am very involved in our parish church and choir and know there are many people praying for me, but lately the dark clouds just seem to keep hanging over me. I can't explain it other than the possibility of drug SE's or as Stephanie so wisely said it could be a MMSTD. I sometimes think I did all this 25 years ago, surgery, chemo, Tamoxifen, etc. and I'm tired of it. Then I tell myself to look at all the good years I had in between, while others have been fighting a long time and still losing the battle. So, I guess I'm having a pity party. But hey, even St. Mother Teresa felt abandoned at times. And I'm certainly no saint.
rpoole, losing hair is a big deal, and I'm so sorry you are having such extreme loss. When I lost all my hair with chemo 25 years ago, I think that was one of the worst weeks of my life. I remember it like it was yesterday. It just all fell out in handfuls. So, my DH helped me shave the last few strands from my head and I mostly wore head scarfs, baseball caps and a wig for dress up. I'm on rd.# 9 now, 5 days left, and my hair has thinned a lot but I think (hope) it's slowing now. I've upped the Biotin to 10mg. a day. It's safe since it's water soluable.
I'm glad to hear that some of you are enjoying your occasional red wine, pizza and coffee. It really is about QOL also.
Sending all of you healing thoughts and prayers and wishing all of us a good nights sleep.
Faith (in the future)
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I am losing my hair also. It is also becoming more and more damaged. Trying to not let it bother me compared to what we are dealing with but it really sucks! What dosage of Biotin is everyone taking?
I attended a MBC conference at Dana Farber this past weekend. I remember a discussion on this thread questioning how the cancer is decreasing if Ibrance just stops the spread but doesn't kill the cancer. The onc at the conference made mention of this and stated that if the cancer cells cannot duplicate itself it will eventually die. The doc also stated he believed that MBC will no longer be a terminal in the next 15 to 20 years. He did state that it may be possible in 10 years but he thought more like 15 to 20.
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Singlemom.... wow what encouraging news from that conference. I'm hoping for 10 years!
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Yes, me too!!
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Zarovka, though this isn't MBC specific, I think the blog post may interest you:
CHEMO IN THE FAST LANE
The subject of the post is something that is actually talked about A LOT in cancer patient online groups: the potential benefits of fasting during chemotherapy. This is not a minor topic of discussion. Chemotherapy, even with its better side effect management now days via many recent & improved co-therapies, can still be debilitating in many patients. This can not only affect their quality of life but if not controlled, even cause dose reductions or treatment cancellations that can directly then impact prognosis and survival length. So side effect management is a very serious topic. For the non-patient readers in the audience, the gravity of the situation in some patients and the need for additional ways to potentially address it is probably underestimated and unrealized.
warmest healing wishes all, Stephanie
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Z and Steph or any other ladies - need your sage advice. As you know I have been working full time (using a hair halo) as my hair loss is major like Robin's, and am on round #10; my mets to sternum were healing/sclerotic on my Aug PET scan, but it did show a lesion to my left mandible. TM was 38. lol Had an MRI of jaw on Monday which showed a lytic lesion and planned to start rads to left side of jaw next week since radiologist can not see me earlier. Nervous, but ok. Then early this morning I heard a pop in my left jaw, and now cannot chew on that side and have chin numbness. Called my UCLA MO this morning and will be going to urgent care to make sure nothing got fractured. Oy. Does anyone have help for a mandible? My MO has had only one case, and that was caused by dental work during Ibrance. Planning soup for next 2 days. (()) Claire
ps. Here are wild flowers from my Santa Barbara winery trip last week. So glad I have traveled and not missed the joys of nature.
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thank you all for info on good eating. I also am loosing my hair dramatically. Lost all of it when first diagnosed with Stage I breast cancer in 2000. I know we all had our mammograms each year, but am confused as to why MBC was not discovered thru those. What was the purpose? Hopefully, I am not sounding negative but surprised when the cancer showed up after so many years. Very thankful that Ibrance is available
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HI Claire,
Not a lot to share, but have one lead and a repost of something I shared earlier - see a dental oncologist! In LA, you may have more than one choice.
Whether your situation is mets or related to ONJ bone deterioration, I hope you seek and find the best possible medical care for you.
Sending best wishes and loving kindness.
Your friend, Stephanie
xxx
Zarovka, I know you had dental trouble earlier this year and hope you can distill wisdom from that suffering. Ouch!X\\
xxx
Lead:
Deb Rags at bcmets.org just reported jaw and mandible mets:
https://www.bcmets.org/articles/177795
I think you can write to her directly or at least post to the group, without being a member.
xxx
Here's something I shared at bco a while back:
https://community.breastcancer.org/forum/6/topics/834699?page=1#post_4796171
Hi AKS.,
I've often wondered how you're doing and am sad to hear that you too are facing terrible dental pain. I'm not but one of a close friend has all year long - it's as devastating to her as progressing abdominal and bone mets. Like you, she has ONJ or as you call it in Alaska, NJS.
I wrote about it at the Ibrance thread just a month ago:
I've become a warrior to speak up about ONJ (osteonecrosis of the jaw) in those with bone mets who take the bone drugs Zometa (or other bisphosphonates) or Xgeva.
S.,I know you want to act on your own behalf and hope you'll find a dental oncologist to perform this delicate work. The damage often extends beyond the tooth and you really don't want to end up with jaw necrosis.
Two close friends with MBC have both endured torture, because of missed diagnosis and mistreatment of ONJ.
They and I are now encouraging everyone with bone mets and dental problems requiring major dental work, including tooth extraction, to see dental oncologists, if available in your region. Most major cancer centers seem to have them or be able to refer.
Please, don't get dental work done by any professional who's not skilled in the specific needs of those who've engaged these strong bone drugs.
Take your time to find proper medical care for dental problems when at risk for ONJ.
End of lecture, no end of loving kindness and high regard, Stephanie
S., I know you want to act quickly on your own behalf and hope you'll find a dental oncologist to perform this delicate work. The damage often extends beyond the tooth and you really don't want to end up with jaw necrosis.
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lalady, sorry for jumping in here but wanted to tell you about Andrew Lessman, and procapslabs.com. He gas a product called Healthy Hair, Skin & Nails that works really well. On another note, I see that you are receiving treatment from UCLA. I assume this is their. Westwood location. If so, I would be interested in knowing who your oncologist is. I too am at UCLA Westwood and my oncologist is John Glaspy.
I will be finishing my first round on Ibrance on 10/3. So looking forward to the week off. Not sure if the side effects are from the Ibrance or the Letrozole but any time I can take one less pill, I am happy. We must all appreciate the little things make huh0
