Ibrance (Palbociclib)
Comments
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Cure-ious,
Okay, I have that mutation, so I viewed the video (which for some reason, I found hysterical with the little people representing the cells and the soothing voice spouting unpronounceable words...) but the link for the article isn't working. If you get a chance, could you please re-post?
Thanks much.
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Hi BevJen,
Link is below-they show these mutant PIK3cA cells have highly active cPLA enzyme that drives up arachiodonic acid and prostaglandin levels in the presence of excess fats/lipids in the bloodstream, and that an inhibitor ASB14780 works on these cell in combination with a low dairy/meat diet, and say:
"it is becoming increasingly appreciated that the diet of Western populations commonly contains an excess of pro-inflammatory omega-6 to omega-3 FAs by up to 50 times (popularly referred to as the "Western" diet), and this may be implicated in the progression of breast and colorectal cancers"
With Piqray, it was shown necessary to avoid sugar, so not sure what is left to eat? but the point was that this ASB14780 inhibitor works best with diet and that the net effect is also to let those natural killer cells get at the tumor, and as expected the drug-diet combo worked on cancers with mutant, but not wild-type (normal), PIKc3A
celebrex also should be good to inhibit prostaglandins for this cancer subtype, but this is still untested
https://www.cell.com/cell/fulltext/S0092-8674(20)30686-3
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Good news and hopefully encouraging for everyone !
PET/CT is void of any disease!! I’ve been on I/F for just over a year. Onc wants to continued treatment until I get 2-3 more negative scans however decreasing Ibrance to 75mg with the hopes of deceasing some side effects.
Still having increases in Ferritin which they believe is from inflammation but I’m not feeling it and scans aren’t showing an issue. Onc is going to research to see if there has been any studies that would connect it to treatments. I’ll let you know if I hear anything.I’ll be staying on here to encourage and pray for you all! Thanks for all your support! You got me through some tough times!
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GinnyO2 Thanks for sharing your good news!
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Great news, Ginny!
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Nice one, Ginny!
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Hi Karen, I too have developed blood clots since starting treatment. They were in my lungs. I’m on Eliquis for life.
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GinnyO2,
Great to hear your news! Congrats! Here's to many more negative scans!
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Ginnyo2- Great to hear your good news!!! Happy for ya.
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Just to clarify re the DVT - my team didn't mention I/L as a cause, just that being a cancer patient on ongoing treatment puts me at greater risk as mentioned. Day 3 on the Rivaroxaban and, apart from light headedness on the first day, seems to be fine. Booboo over in Mel's living room has reassuringly said this drug is considered to be really good and I can still walk on it pain free. Just need the swelling to go down and then I'll be confident that the clot has resolved.
Jen, clots in your lungs is a scary business!
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Ginny02, Congrats on the good scan!
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Cure-ious - it seems like there is more and more advocacy for reduced meat / increased plant based diets. https://foodrevolution.org/ is one organization I hear from and have watched some sessions. Some argue it is how we raise animals, the increased stress unhealthy lives for those animals, and the hormones/drugs pumped into them, all end up in the meat, eggs, milk consumed. How we raise plants is not always healthy/safe either , all the pesticides, salmonella outbreaks...... I think I feel better when I eat less meat, definitely better cutting back on sugar.
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Ginny02, you said your onc wants you to continue treatment until you get 2-3 more negative scans... then what? It sounds like he'll then want to make a change. Why does he want to do that, if the I/F is working, and if you do make a switch, which one does he want to change?
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Ginny02 - fantastic news! Thanks for sharing!
Karen, I didn't know we were more susceptible to blood clots - good info to know. Relieved that you caught it!
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Thanks everyone! Praying for us all to have NED and stay there!
Ciaci Doc wants to see me get a better quality of life, as do I, and the treatment has kept my lab numbers down, neuropathy has increased causing distance walking to decrease. Decreasing the Ibrance to 75mg should help ..IMHO
Going off would allow my body to rest awhile. My high Ferritin needs to come down. If it doesn’t come down then it may be my body reacting to the drugs. Going to start taking wheat grass, in hopes that it will cause iron chelation. I’ll be sure to clarify whether or not we are stopping all treatment after 3 negative scans and get back to you. I was so excited that I may have missed something 🤭
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Ginny, just to say I’ve been on 75mg Ibrance 3 weeks on and 2 weeks off for two years now and NEAD.
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Karen, thank sooo much for that info! I don't see that many on the forum who have mets to the lung, so your input means a lot! How soon after your initial treatment did go go into NEAD
Also, what grade?
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GinnyO2...great news!!!
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Thanks, Jacksie !
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Good News Ginny02!!
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Ginny, Grade 3 like you - I did first couple of cycles on 125mg Ibrance, dropped to 100 for a couple then to 75 when my bloods weren’t recovering after a week off. Then we realised that I consistently manage to get to the levels needed after 2 weeks off ( which bears no relationship at all to how I actually feel by the way), so we formalised that system, although it does make me something of an odd bod with my team! NED was reported on my second scan 6 months in but my 3 month scan had already shown a significant shrinkage of a tumour on my chest wall. It seems this was basically the same tumour as I had 13 years ago but had now set up on my chest wall because I had a mastectomy. Spread to my lungs were cells into the pleura - picked up because my lung filled with fluid - and there were some nodes kicking about in there too. My MO thinks if / when it starts ups again it’ll probably be in the same way, so I need to keep an eye on any breathlessness or pain in my back/ side.
What about yourself?
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Elenas, Thank you ! Praying that everyone gets to experience NED OR NEAD !
Karen, I guess we’re pretty much on the same track however, although I do get brief intermittent sharp pains in my left chest , they only last a few seconds. Shortness of breath with distance walking and weakness in my legs are my primary problems, although like you, my labs don’t seem to recover on my week off. I did 7 months on 125 and then 100 from this Feb up until today when I start 75mg ...all of which were and are, 3 weeks on and one-off. Doc and I are hoping that the decrease in dose will help de erase side effects too. Ummmm, doesn’t sound so promising now but I’ll ask him about doing your routine if this doesn’t pan out.
So you were stage 4 since 2013? WOW!I had stage 2 in 1985 (no mets) and I did a partial mastectomy and radiation. Back then they gave you a lot more radiation than they do today and seeing that I was only in my early 30’s they gave me quite a bit more. which caused scarring ( fibrosis). They are finding that those of us who have lived this many years eventually show cardiac issues as well lung issues. I have a pacemaker and have had bronchectasis and pneumonia a few times. So, I have no complaint now ...I’ve been blessed beyond measure !
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Ginny02, I too had some Mets in the pleura of my lung when first diagnosed on Jan 17. I really thought from what I read that it meant I had only a few months left. The frustrating thing is, that after 3 1/2 years of treatment, nothing shows on my scan except in my breast and lymph nodes, but my oncologist couldn't get a surgeon to agree to surgery because I'm stage 4. Now my tumor markers have risen and I wonder if surgery would've kept my cancer from seeding as much. I guess there's no way to know. I'm also now dealing with a separate HER2+ cancer in the left breast. We always think of what we should've done. I used to wonder about insisting on an MRI because of very dense breasts.
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I do CT's to monitor my treatment. I have been doing oral and IV contrast--- no food or water for 4 hours before test, drink 1 liter of a lemonade tasting contrast 1 hour before test, and then given IV contrast during CT. My new MO has my CT scheduled for Sept 28--- I messaged nurse to ask about prep. No food/water for 2 hours before test, and IV contrast only-- no drinking contrast.
So, question for group--- for the ones that do CT's, and ones with organ involvement (liver for me) -- how do you do CT's?? Wonder if one type is better than another for visualizing things?
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Hi, Candy,
I have no eating restrictions on my CTs. I do have to drink the contrast -- my center has gone to the clear stuff that they said tasted "just like water." Unfortunately for me, I have a very sensitive sense of smell and taste, and I think it's the taste of the bottle that offends me. So the last two times, I asked if they could flavor the "water" and they said yes -- they put in some crystal lite which made it SOOO much better. I also have an IV for additional contrast.
This has just been the practice at my center -- I also have liver mets and bone.
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Elenas, so sorry for about your situation. May e you could get a second opinion before anything is done this time. My primary doesn’t want to do order a colonoscopy even though I’m due for one. I get seen every 2 years because I usually end up having several polys. Primary doesn’t said that she won’t refer me back because I have stage 4. Now I’m in remission so I’m hoping that she’ll change her mind. Don’t want to have a second cancer because an aggressive ( which I’ve had before ) polyp turns cancerous too!
If she doesn’t change her mind then I’ll probably get a.new PCP.
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Question. Has anyone ever taken Ibrance by iitself ? Meaning no Fulvestrant or any other drug along with it
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GinnyO2,
I think that Ibrance is designed to be given with an anti-hormonal, but not alone. On the other hand, some docs do prescribe either fulvestrant (faslodex) or an AI alone.
Regarding the colonoscopy, that seems weird. For a long time, I had colonoscopies every 2 years for the same reason. Then I went to 3. Then I went to 5. This is my 5 year anniversary. My PCP has been bugging me for over 6 months telling me to get my colonoscopy. I am having one next Wednesday (provided that I pass my required Covid test first). No one -- the PCP or the gastroenterologist -- has ever mentioned that I shouldn't go through with this. I've been metastatic since 2006, so I've had a few colonoscopies in that time period! I'd start looking for a new PCP.
When I was diagnosed with my first recurrence in 2006, my PCP at that time would always give me a sad sack look when I went in. She didn't want to order anything for me, and seemed surprised when I would actually show up for my checkups or other appointments. It was very disconcerting. Clearly she thought I was going to kick off in short order. Well, it's 14 years later and I'm still here.
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BevJen, WOW, 14 years ! That’s encouraging!
My concern now is that I had the Fulvestrant shot last Thursday and I usually start the Ibrance on Saturday however my Ibrance didn’t arrive until today!
I was going to call my Onc and ask his thoughts but I didn’t ....and man did I feel horrible for a few hours after I took it today. Technically I’m behind by 36 hours because I was taking it at night before and today I started early this morning. Hope it doesn’t continue to make me feel so bad.I’m hoping that I don’t need to call him! 🙏🙏
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GinnyO2,
I don't think that's a problem. I usually get my fulvestrant on my first day OFF of Ibrance, so I'm going 7 days without it. My MO is aware of this, and has never said anything. I'm sorry that you're not feeling great, but each cycle can be a different experience. If it keeps up, though, I might call my MO just to let them know.
Good luck.
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