Ibrance (Palbociclib)
Comments
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Divine, you've got this! Just at the time Verzenio is gaining ground! My friends on it say you just need to get a good plan to control diarrhea. There is a Verzenio thread but don't leave this one. We need you!
42young, Wahoo! Tell your doc we'll take care of you here from now on!
Love from PatGMc
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Quick chat with MO did not get us much information. He just said any hair growth product/shampoo or baby shampoo will work..
I vaguely remember someone here mentioned about some kind of shampoo..
She lost all of hair during chemo but did cope with it fine as she knew it grows back. she is stressed this time knowing it won't be the case.
Thank you for quick responses.
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Cureious and jhj,
My hair thinned quite a bit under Ibrance/Letrozole. The first 3 months were the worst but then I noticed more gradual thinning. I started taking 10000 mcg of biotin every day in gummy form. It has made a huge difference! I think I started around the beginning of this year. My hair is thick again-those really thin patches are completely gone. I'm working on my eye brows and eyelashes now. I got this product-Rapid Lash for the brows-it is really helping and just started the one for the eyelashes. I also started taking Collagen last week-for both hair and nail issues. My nails are really ridged and always breaking off so I'm hoping this will help. Good luck! Sometimes it seems silly but having my hair closer to how it used to be helps me to feel better.
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jhj, my hair never grew back well after the last big chemo. I grieved about that for a little while but learned to live with it. (I actually miss the eyebrows and thicker lashes more.) My sweet husband now shaves the fuzz that grows back and I wear a wig when I get out and about. I've decided caring for hair...getting it colored and cut, washing, drying....would take more energy than I have these days. If some miracle cure for baldness comes along maybe I'll go for it. Maybe not.
I pray that your wife gets some peace about the hair whichever way it goes.
Love from PatGMc
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Divine,
Just something to consider-when I started Ibrance I had extensive bone mets and lots of lung and nodal involvement. During the first three months my pleural fluid and lymph nodes (as well as my primary tumor) showed great improvement on the CT scan. My bone mets actually increased. They were not the most critical problem at that time so there was no question of me not staying on Ibrance even though the bone mets increased. i'm wondering if Ibrance might take longer on bone mets? On my second three month scan, the bones mets started looking sclerotic. It might be worth getting a second opinion to see if it would be worthwhile to give Ibrance more time. I wonder how they are able to tell whether it is the Ibrance or your AI failing? I hate to see you having to change treatments so soon-I imagine the new progression is scary. Best wishes.
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I sometimes I wish there was a like button here to show I agree. I liked Miss Chicago comments to Miss Divine. And of course all the excitement over the good scans. Don't like that there's progression reported.
Hope my calling some "Miss . . . " doesn't bother anyone. Wierd habit I've got.
GAILMARY
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Divine, Also, how long (total) have you been on anti-estrogens? Because if its been awhile, is there some way they can test if the cancer is now resistant to endocrine therapy? It seems that you remain bone-only mets, and they are taking a stab in the dark that AIs and CDK4,6 inhibitors will still work, because there is no option for biopsy?
Is it also possible to add Faslodex to the Versenio and Femara?
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lots going on ladies!
Divine.. not so good and I do also wonder if giving Ibrance a little more time may be worth asking about since you’ve not been on it that long... however your MO is your guru...or should be!
Re the hair I also used Nioxin products first time around on the advice of my nurses.... but without doing half a head wouldn’t be able to testify as to efficacy...except my hair grew back really well. This time on Ibrance/ Letrozole I have a little thinning and do still use Nioxin. We’ll see how long I keep my hair, but it looks pretty good if a little fine
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Divine, I'm sorry you have experienced a second progression in such a short time - I can only imagine how scary that must feel. I hope things turn for the better soon.
To echo what some other ladies have said, I am a bit confused that your doctor is keeping you on an aromatase inhibitor, when it seems that they are not working very well for you anymore. This is not to say that Verzenio/Aromasin won't work - Verzenio has single agent activity, so it could work on it's own (or paired with an AI that's not doing much). However, it works much better/longer when paired with an effective hormonal treatment. It seems that most doctors would move to Faslodex after progression on both a steroidal and a non-steroidal aromatase inhibitor. Based on some of the newest data, I suspect most would go from AI/Ibrance to Faslodex/Verzenio (baring insurance issues), so you get to keep the extra bang from having a CDK4/6 inhibitor on board. Did your MO offer an explanation why not Faslodex/Verzenio instead of Aromasin/Verzenio? I wouldn't normally say you should second guess your doctor and go with advice from strangers on the internet, but perhaps a second opinion might be beneficial.
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The onc is saying going from Ibrance/Aromasin to Ibrance/Faslodex is called palbo after palbo. (Palboceclib being the drug name of Ibrance). She said since the Ibrance/Aromasin combo showed progression after 5 months only, that the palbo after palbo is a clinical trial and I needed to go six months to show progression. Yes, it sounds screwy to me, too, but that is as she explained it. She also is hesitant for me to start with the shots, thats why she is keeping me on Aromasin.
Those of you who get second opinions, do you tell your onc your are getting another opinion? I've been with my onc almost 9 years but the recent developments have me wondering what to do. Dh says this onc has got me this far, but he doesn't truly understand the whole process.
I wonder if I'd get in to see another onc soon enough to get another opinion before starting the Verzenio. It seems you always wait awhile to get in to a new doctor.
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HI Divine,
I do tell my MO if I am getting a second opinion. It is nothing personal. It is my body, my choice. Simple as that. And perhaps the second opinion will be helpful to validate your current MOs thoughts and opinions, and will make you feel more confident with them? I see it all as a positive move forward.
As a provider, I do not get insulted when patients tell me they are going to go see a doctor or another provider. I am actually happen that they are taking an initiative, if they do not feel they are gaining traction with me.
Love,
Philly
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Hahaha PatGMc!!!
That was an amazingly true post! That IS what my face looks like when I use q-tips in my ears. I know that it is not recommended to do so, but I cannot control myself. If I go a couple days without cleaning my ears, I feel like I am going to go bananas! I may possibly have some OCD or simply OD going on here.
I do not have any help for hair thinning. I think that the biotin supplement is an idea. There is an herb called Black Cohosh, which is Chinese herbal medicine there is a fabled story about this herb helping an old man change his hair from grey to the luscious and shiny black hair of his youth. I have yet to see this work clinically. However, Black Cohosh is often prescribed by western herbalists to help calm hot flashes and menopausal symptoms :0)
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I think switching the Ibrance for Verzenio makes perfect sense. It's the keeping the Aromasin part that's a bit puzzling. So you could probably start the Verzenio even if you decide to look for a second opinion.
Philly makes a good point, that if the second opinion doc recommends the same thing, you would feel much more confident in your MO. Maybe there is a reason behind your MO's choice and you could at least get a better explanation. Here on BCO we are all just patients, and even with all the wonderful scientific understanding of people like Cure-ious and the late Zarovka, we don't have the experience that a practicing breast cancer oncologist has. Our priorities might be different from a doctor's priorities. I/we might think that Faslodex/Verzenio has a better chance to work than Aromasin/Verzenio and therefore it should be the next choice. A doctor might disagree based on their experience. Or they might agree on the "better chance" part, but believe that you should squeeze each treatment of all its potential, and that given the relatively minor progression you could afford to try Aromasin/Verzenio for three months and only switch to Faslodex/Verzenio if it doesn't work.
I hope some of the more assertive ladies will chime in with the practicalities of how you would go about a second opinion if you do decide to go for one. I'm a wuss and would be petrified to upset anyone, so I don't know how I would deal with your situation. I hope you find a path forward that gives you piece of mind and confidence to forge ahead. And that whatever your next treatment is, it zaps those mets into oblivion.
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Philly, thanks for your comments on getting a second opinion. So true, it is my body, my literal life, so my choice. It’s good to hear that you as a provider aren’t bothered when patients seek a second opinion.
Piggy, I appreciate your comment: “on BCO we are all just patients, and...we don't have the experience that a practicing breast cancer oncologist has.” I always keep this in mind. Yes, we draw on our personal experience and always want to give best advice possible to others, but I keep in mind my onc sees a lot in her line of work.
You also say, “ a doctor might....believe that you should squeeze each treatment of all its potential” and this is what I got out of my conversation with the onc.
One more point you make that I relate to: being a wuss and not wanting to upset someone. The idea of getting a second opinion causes me lots of anxiety for this reason along with the uncertainty of seeing someone new. I would make myself do it , tho, if i thought my onc didnt wasnt looking out for my best interest .
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GinnyO2, I have MBC to lungs but don’t know the grade. They never mentioned it and I didn’t ask. I started Ibrance and letrozole and was on that for about 16 months. The side effects really bothered me and since we were going on a three week trip to Italy, I asked if I could take a break. MO said yes and I expected to go back on Ibrance on my return however, my MO said let’s just try letrozole alone and that’s what I did. Two years later I’m still only on Letrozole. That being said, my cancer has been very slow growing since it took 25 years to return and that’s why my MO thinks the Letrozole will keep it in check for awhile. The good news is there is no sign of my lung tumor anymore. Good luck to you, hope these drugs treat you well.
Faith (in the future )
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About second opinions:
Whenever I'm making a decision on any of this I ask myself, "What would I do if this was my daughter?"
There was a time when the options for people with MBC were limited (Heck, it didn't even have a name!). Getting a second opinion made no sense as there was only one way to go.....big chemo.
Now there are so many options and more appearing all the time. It makes sense to hear a different point of view and then prayerfully consider what to choose. I have friends who now have their original oncologist consulting with the second opinion doc and going with #2's recommendation.
Love from PatGMc
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Faith, I always love hearing your story and I think the moral of it is "Go on vacation to Italy and never look back!"
Love from PatGMc
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To everyone with hair issues, I take 10 mg Biotin for thinning hair and it seems to help a lot. Also, thanks to BCO and a thread called “Thinning Hair", I found out about a laser hair treatment. There is a helmet called IRestore that I use and it is working to grow my hair thicker. It's pricey but they do give discounts to BC patients. Check out the thread for details. The gal who started the thread contacted the company and asked them for a discount. Check it out online. Also, there is a six month return refund policy if it doesn't work for you. Hope this helps someone.
Love and prayers,
Faith (in the future).
Edited to add, thanks PatMcG. Everyone should definitely go to Italy. I love all your posts. They really make me smile.
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I like reading everyone's posts. Pat, you crack this lurker up.
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Ginny;
I also have lung Mets and am on Ibrance and Letrozole. I’m on my 17th cycle and there is only one spot left which they are not sure is a tumour. I get a CA125 each month with my bloodwork and it is now 11 down from 359 when I started. Within 2 months it was in the normal range. Last week at my appointment I asked him if it would rise with Mets to other places like my liver and he said yes. As it has been so accurate for me it gives me comfort that the treatments are working between my scans.
Cathy
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pat - you crack me up!
Divine - sorry about the progression. It is so frustrating! As for a second opinion, my onco told me I could get one and actually encouraged it. Don’t be bashful. Get that second opinion. They should expect it. And maybe you’ll get some sense of peace and confidence if both oncos say the same thing. Please don’t leave - we would love to hear how V is going.
Jhj - my onco said to take biotin. If that doesn’t work, rogaine. I usually wash my hair twice a week and use dry shampoo the rest of the time. My hair thinned out while on Ibrance and Faslodex. Now it is growing back.
Tomorrow is my appointment - send those good vibes my way.
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Biotin!! will try it, thanks, Faith!!!
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Moomala... Unpacking.....not thrilled with the house apparently this house because it is a ADA -handicap house they removed the cabinets under the kitchen sink and they just leave the area open with exposed garbage disposal and dirty pipes...I do not want to put a skirt or curtain there bc i really don't like that look so I am trying to figure out what to do there??? They also did it in my master bath but I don't mind as much there because no one can see that.
Yesterday was very very very emotional finally seeing "OUR" things after 6 months and I was having very very negative sad thoughts lots of tears. Right now I am in unpacking mode so hopefully I can keep the tears at bay.
Ok...so for those all that asked I still have my sores!!! I cannot get the Mugard...>spelling because my insurance will not cover it and it's $600.00!!!!!! So I am just been trying to use the patches from amazon, a oil that PAT also linked me too > that just came yesterday but mostly just been laying on the lidocaine gel. My husband says they look a little better..but I don't see it.
Did anyone hear of Dexamethasone?? The nurse for my MO said she can call that in and I can use that in between something she told me to mix which is liquid benadryl and Maalox and to swish with that. So I will probably get that today.
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Ginny -- My wife has MBC to the lungs and is pretty much on the same schedule as you: nodules found in April with biopsy confirming MBC to the lungs in May. Her first scan is scheduled for 9/16. We're getting a little antsy here too. Good luck with your's!
Divine -- So sorry to hear about your progression. My wife was concerned about potentially alienating her MO if she wanted a second opinion so she simply asked her MO about second opinions and her response was: "This isn't about me; it's about you. If you would feel more comfortable with a second opinion, by all means, get one. You're not going to hurt my feelings. I want you to feel as comfortable as possible with your treatment." Hoping for the best with your new treatments!
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NR, maybe take a picture now of the external mouth sore, so when you meet your new MO next week she or he can see what you have been dealing with?
The ingedients you mention above, sounds like the ingedients in my Magic Mouthwash Rx..
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Thanks Pat. I already told my husband that ladies on this board know more about MBC than my doctor.
Devine, i was sent to 2nd opinion by my MO. At, my cancer center, I believe they do that for all at first diagnosis and when there is change in treatment. The purpose is to open everyone to clinical trials at a larger center as well as to confirm if second MO agrees with treatment plan.
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Divine,I’m so sorry to hear of your progression. After being stable so long, this just can’t be easy. Sending you enormous hugs.
We have a few similarities so I wanted to share what my team at UCLA has told me.
For the radiation conversation, for a patient like you with very low tumor burden, they would use SBRT on the new spot. When I was dx, they zapped my one bone met right away. Like Cureious said, there could be more that show up in your next scan but since we can only make choices based on what we know today, the SBRT seems like a wise choice. This treatment approach is newer as rads have mostly been used for palliative purposes - MD Anderson has published excellent studies on it.
For the switch of meds, when I’ve asked about what’s next they explained that the med failure is likely the Femara, since the Ibrance is acting as an enhancement to the AI. I questioned my MO at first why I wouldn’t start with an AI alone and save Ibrance for later. He said he was concerned with overall survival and the addition of Ibrance would be like using a bigger hmmer. At the same time, the CDK46s each work a bit differently. So, the suggestion is that I’d likely change to Faslodex and Verzenio as next line.
Because you had such a long run on an AI alone, it is intuitive that your cancer may have become resistant. It was a good idea to try adding Ibrance to see if a bigger hammer would help, but a different MO could just as easily have changed you to Faslodex and Ibrance from the start.
I know there is a new met site. Was there improvement in the other met site that prompted the treatment switch? If not, that would seem to provide a good clue about the AI question.
Resensitizing your cancer to AIs is another thought - which I recall involves tamoxifen. But that feels like something to hold onto for down the road.
Lots of love to you0 -
Bev,
For the Ibrance congestion, I have found sleeping with a cool mist humidifier to be a game changer. I also use Ocean saline rinse several times a day when particularly congested as it’s wonderfully soothing. For the bloody nose, which is usually accompanied by dryness for me to just like Philly, I have found that Ayr saline gel is a good soother. Aquaphir is another than can really help for inside the noae
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Thanks, Jen. Heading to my local Walgreens today to try these tricks. Appreciate it!
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nicolered my onc gave me the mouthwash free sample, said they had plenty.
Tanya
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