Ibrance (Palbociclib)
Comments
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Jaycee, so sorry to hear that you are having neuropathy in your feet. I got partial numbness in part of the bottom of my right foot on Ibrance, and it is a bit worse now on Halaven, though the problem seems to subside during the week off. Your neuropathy is actually something that should concern the doctor, what have they said about it ?. When I told the oncologist about my feet she said she could lower the does of the Halaven if it got worse. I'd say don't keep quiet about your burning feet. I do not know what Neurontin is but I am going to look it up, that sounds like a scary reaction. Okay I just looked it up. Yegads ! Sounds horrible. No more no more ! Sigh. I sure hope you feel better.
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Thanks for the comments, grannix and amarantha. I've had neuropathy on and off for years. It's an MS thing and it got worse during original chemo. The I/F ramped it up to the point of, yes, grannix, waking me up at night. Trigger finger is supposed to be very painful and I hope you find some relief. I hope the tumeric ladies chime in soon. I'm pretty sure that the letrozole is the main culprit because when I went off of it for a month recently, the burning feet completely went away. I've gone off Ibrance for a month before and the burning stayed. BTW, my MS forum people said the herb horsetail works on thinning nails. I go back and forth between the forums and ask your questions there, too. Hope this has some value. They are usually pretty smart.
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I've just ordered the Sally Hansen Miracle Nail Thickener. Thanks, all...we shall see.
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Wondering if anyone experiences pain in their calves/shins while on Ibrance/letrozole? My hip pain is so bad, I can only find one position to sleep at night. I don't know if my weird walking is causing my calf issues or if the pain is from the meds. Thanks for any help.
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Re: Turmeric....
When I took Femara I had such trouble with one hand, one leg and the bottoms of my feet that I stopped taking the drug and just took my chances. (I was NED after Taxol/Carboplatin for chest wall mets.) I was very close to having to use a walker and losing the ability to make art. When the bone mets came into my life I decided to give Arimidex a try and started taking Turmeric the same day. I've been doing this since September of 2016 and have just the smallest amount of discomfort. I'm praying the situation stays like this and I hope it works for you my friends.
I order this brand from Amazon:
https://www.amazon.com/MegaFood-Turmeric-Strength-...=sr_1_1_a_it?ie=UTF8&qid=1520295634&sr=8-1&keywords=mega+Food+turmeric+joints
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About the leg pain on an AI:
My sister had trigger finger when she took Femara and it made sense to me that it was a ligament thing. I'm confident the pain in my leg was the same. My oncologist didn't believe the side effects I had were from Femara but they were completely gone before two months went by without the drug. He was sure I had Plantar Fasciitis in my feet but....no Femara, no foot pain.
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Thanks, Pat. That was my experience...no Femara-no foot pain and I only went off it for one month. I am researching the different tumeric offerings at Amazon. I'm a little concerned about the black pepper with my gastritis but they all have it. And the foot pain is not really joint pain. Another one like the one you buy is the same name but "whole body" instead of joint. Have to figure out what the difference is. There is definitely tumeric in my future. My new MO is Indian, too. I need to ask her.
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I take a brand of turmeric called "CuraMed" by Terry Naturally. It's supposed to be the superior absorption form of curcumin which is the ingredient in the turmeric that's supposed to help. Jaycee, I didn't see any mention of black pepper in it. I think Zarovka was the one who mentioned it first in this forum a long time ago. I think it helps but I still have lots of joint and muscle pain from the letrozole even though I'm not on Ibrance right now.
JoynerL, my nails look like yours too. I've been using "Essie Treat and Color" and I believe it makes them stronger. Amazon also has that product. What we would do without that behemoth of a company? They actually scare me.
Hang in there everyone, Ibrance is a good drug. I have more energy now but still lots of SE's from letrozole.
Faith (in the future).
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Ashlyn... I hope you go well on the 3 weeks on, 2 off regime. My tumour marker bounces around from 450 to 520 and it can be anything in between and my oncologist is saying the same thing as yours..."we'll only worry if it keeps going up and stays up" so I don't worry about it. I leave the worrying to him. Mine was 1100 plus before I started on Letrozole and it dropped to 900 plus after that, and then 700. Once Ibrance was added it kept going down until it was 320 but suddenly jumped up to 500 and then 520 and now it just goes up and down between the figures above. Tumour markers are not a good indicator, as you say. We (my oncologist and I) rely on my three monthly scans.
In case anyone is interested, I've begun a blog to chronicle my MBC story. The reason is I don't want this experience to count for nothing. I need to think there's a purpose to this so I'm sharing my story anonymously but with all of the details so that, hopefully, someone out there in cyberspace might benefit from it. I also want to dispel the many myths surrounding MBC.....you know the ones..."Think positive....you can fight this....when does your treatment finish? You will soon be in remission" etc etc. People need to know that we will never be finished with treatment and that the key word for us is research and that that's where money needs to go. We need to have the hope that we can buy time until the next new treatment comes along. The blog is not a sob story. Far from it, and I'm hoping to keep it lighthearted but to make my point that MBC is called the hidden breast cancer for a reason and that too few people understand it. I'd love it if you would share it widely if you think that's appropriate. The stats in it are Australian but American stats are the same.
It's called Breast Cancer and My Life and the link is
www.positivetrials.blogspot.com.au
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Blueshine....belatedly answering your question. I'm on a trial so I have to follow the trial protocol. That's why I'm on 3 weeks on, 2 off.
JoynerL....I was just going to recommend Sally Hansen's Miracle Cure. I started using it last week and it's made a heap of difference. My nails were actually lifting away from the nail bed at the sides and the ridges were cracking open. The tips of my nails were jagged. Since using the product they've improved a lot...at least they're holding together now!
In case anyone is interested, I've begun a blog to chronicle my MBC story. The reason is I don't want this experience to count for nothing. I need to think there's a purpose to this so I'm sharing my story anonymously but with all of the details so that, hopefully, someone out there in cyberspace might benefit from it. I also want to dispel the many myths surrounding MBC.....you know the ones..."Think positive....you can fight this....when does your treatment finish? You will soon be in remission" etc etc. People need to know that we will never be finished with treatment and that the key word for us is research and that that's where money needs to go. We need to have the hope that we can buy time until the next new treatment comes along. The blog is not a sob story. Far from it, and I'm hoping to keep it lighthearted but to make my point that MBC is called the hidden breast cancer for a reason and that too few people understand it. I'd love it if you would share it widely if you think that's appropriate. The stats in it are Australian but American stats are the same.
It's called Breast Cancer and My Life and the link is
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Leapfrog, I am reading your blog. So real, so personal. Thank you.
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I had similar problem with my trigger finger and a lot of numbness in my fingers. The dr at ortho Carolina (orthopedic group). He put a needle with medication right at the bottom of my trigger finger and so far have not had any problems with that finger collapsing or numbness in the other fingers. Shot did not hurt too bad.0
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As you probably already know, one of the problems with curcumin is absorption into the blood stream. Very little of it actually gets absorbed. There are various strategies, such as piperine from black pepper to improve absorption. Another strategy is to have the curcumin processed into small particles, such as nanoparticles, or liposomes. There is a product called theracurmin which is supposed to be highly absorbable.
Here's an article that compares a few of the curcumin supplements that are supposed to be improved forms:
https://www.superfoodly.com/best-turmeric-curcumin...
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Thanks, husband. I went to Amazon and bought the one your article recommended and the one Pat recommended. So many choices. No way to decide. I'll take them and see what happens.
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I’m experiencing some lack of appetite and bloating when I eat a normal sized meal, causing me to eat less (I’m only on my first cycle). Has anyone lost weight with the Ibrance/Faslodex combo? Looking for a silver lining.
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So then Tumeric or those supplements in above message are okay with the Ibrance/Femara combination? Has anyone had a pneumonia vaccination (usually given at age 65, I'm 64) while on this combination? Thank you.
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Janky, I'm virtually certain that I had my pneumonia shot while on Ibrance/Faslodex. The Specialty Pharmacy says that we should check in with them, however, before taking any sort of medications, even over the counter.
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Janky, yes, I had a pneumonia shot while on Ibrance. It was recommended by my onc.
Lauren, I have gained weight on Ibrance/Letrozole. One way around your problem is to eat more small-sized meals. You may also find your body adjusts and the bloating will stop (mine did.) My problem is also less exercise since I have no stamina, but I am now working to lose some weight slowly, and purposefully.
I just saw my onc and she approved my going to Indonesia in August. Yay! Of course she also suggested I get travel insurance...
Anyone here get a Hepatitis A shot while on Ibrance? She said it would be fine.
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Re: Pneumonia Shot....
My oncologist recommended that I get one last year and I never got around to it. I got pneumonia in December and it was rough. I highly recommend that everyone get one!
Re: Ibrance appetite...
For the first months of Ibrance I had little appetite and lost weight. I think most people will find that the AI kicks in and your appetite returns. Weight gain is one of those "this is just not fair!" parts of this treatment, I'm afraid, but I'm choosing to be a fat little happy self today anyway!!
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Thanks so much for the feedback IntoLight and Patg! I was on arimidex for 11 years after my original dx so I’m unfortunately aware of the wt gain (40 pounds worth) I’m just hoping I don’t gain more. I thought Faslodex worked differently than the AIs (blocks the receptor on the cancer cell rather than eliminating the estrogen). But I really don’t know how Ibrance works at all. I’m only 12 days into this combo so I’m just trying to figure it all out.
Indonesia in August sounds wonderful!
Lauren
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IntoLight how long have you been on the Ibrance/Femara combo? I have only done one cycle, hoping to start 2nd one on Friday. I want to travel to Australia in October, so really hoping my numbers (neutrophils) pick up and regulate so that I can - right now my MO says not to purchase my tickets yet
I am going to look into honey and reishi mushrooms. Thanks everyone for being so supportive! Cheers j0 -
Janky, I started my Ibrance/Femara combo in June 2016, so I have been on it for 21 cycles. I had good results that showed resolution of many of my tumors in 6 months, so it is possible if you can tolerate it and your neutrophils can stabilize, that you can travel. It all depends on how well you tolerate everything in case you need medical help when you are gone. I have no trouble travelling and just returned from New Orleans last month without incident. But my MO did say to buy travel insurance as nothing is certain in the Ibrance dance. We plan on flying to Australia the second half of our trip to visit some dear friends.
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I took a menococchal vaccine to travel with permission of my onc. Praying for a great trip to Dubai we leave Friday
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Hi all- I wanted to post an update to a previous discussion about the causes of resistance to Ibrance-Femara, and the question of what do to next? it is becoming increasing clear that there are several different ways MBC cells can mutate and escape from the drug.
A new study discusses mutations that can develop in the estrogen receptor itself. These so-called ESR mutations make the estrogen receptor active even in the absence of estrogen (normally it needs estrogen to be active and turn on the genes that drive cancer cells to grow). Therefore, femara and the other estrogen inhibitors do not work, because the cancer cells do not need estrogen anymore. Faslodex, which chews up (degrades) the estrogen receptor is effective on the mutant ER protein.
Unfortunately, the new study found that these new cancer cells responsible for progression have also other changes that make them more likely to metastasize to organs. The study tried to identify genes that would be responsible for growth of the cells, which found that the CDK7 kinase plays an important role. This is useful information, because a targeted small molecule inhibitor of CDK7 exists and is just starting in clinical trials for other cancers. Additional anti-CDK7 drugs are in development.
So whereas many firstline treatments now are Femara/AI and Ibrance/CDK4,6 inhibitor, it is possible that secondline treatment for those cancers with mutant ER would be Faslodex plus a CDK7 inhibitor. Apparently about 30% of the cancers that progress on Ibrance-Femara have developed a mutation of the ER, which is why a new biopsy is indicated to see what the progressed cancer looks like genetically.
Here is a link to the story, which concludes that trials for MBC with the CDK7 inhibitor and Faslodex are in the planning stage:
https://www.sciencedaily.com/releases/2018/02/1802...
As discussed earlier in this blog, another way to resistance is to amplify the FGFR family of genes, which dials up the activity of CDK4,6 and makes Ibrance ineffective. For this type of cancer, there is a trial to use new generation pan- FGFR inhibitors in addition to Faslodex and Ibrance. The idea there is that inhibiting the FGFR will make the CDK4,6 activity go back down to normal levels, so that hopefully it can again get inhibited by Ibrance.
Yet another trial is looking at combining a new CDK4,6 inhibitor, Abemaciclib, with the checkpoint immunotherapy, Keytruda. The idea in this trial is based on findings reported in Nature last year that Ibrance can cause T cells to migrate towards breast cancer, which is one thing that makes it not sensitive to immunotherapy. So the question is whether the Abemaciclib is making the MBC sensitive to immunotherapy, which could potentially strongly enhance the duration of response to Ibrance and other CDK4,6 inhibitors.
These are new drugs and trials and side effects are unknown or only slowly becoming clear, so its good to have them on your radar as the year progresses. Of course some people get good results with Faslodex alone, plus some trials combine Faslodex with CDK4,6 inhibitor and mTOR inhibitors, and those we will probably learn more about sooner as they have been going on longer.
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Ah, I see there is some dispute as to whether the ER mutant cancers do or do not respond to Faslodex. We'll see what the clinical trials look like, whether they will test CDK7 inhibitor alone or with other drugs...
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SandiBeach .....thank you.
Cure-ious...thanks so much for the informative post. I've tucked it away for future reference.
To those who are experiencing lack of appetite on Ibrance. Yes, I am as well but I'm now on my 13th cycle and haven't lost weight. In my case that's a good thing as I lost 7kg (about 18lbs) around the time of my diagnosis and I have not climbed back up to my original weight. I have a lot of indigestion and hiccup my way through meals!! A few sips of dry ginger ale often helps.
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Cure-ious, many thanks for the comprehensive update. Such valuable information. We're fortunate to have you on our team!
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Cure-ious, i fund hope in these lines of research. I’m saving this one in my future but not today file
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Thank you cureious. You ladies are amazing.
Tanya
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Adding another thank you Cure-ious! You give us all hope to hang onto.
Faith (in the future
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