Palbociclib and letrozole

[KateBush]

Hi all , I have been on this treatment since July 2018 .

So 12 months. I wonder how long others have taken this ??

[nstonerocks]

On Ibrance 4 years. Was in letrozole about 3 years. Switched to faslodex last September. Seems to keep me relatively stable

[KateBush in reply to nstonerocks]

Thank you so much for replying. I think I should stop googling !

[nstonerocks in reply to KateBush]

I think we each have varied tolerances for “researching” all this. I am a nurse. I am not expert in oncology, which is probably a good thing. I stay fairly current, in large part because of this board, but I don’t delve into the literature. It makes me too anxious. For others, they feel better being highly informed. I have a very good oncologist, and she is the pilot, I am an informed passenger. I work on trying to keep up healthy habits and staying calm and focused on living my best life. We are the first generation so to speak on Ibrance. There are statistics, but there is wide variability on what works for whom for how long. Fingers crossed, we will be swallowing these pills for a long time😉

[KateBush in reply to nstonerocks]

Hi yes you are absolutely right. I slip between wanting to know and then not wanting to know when I think I know. I suppose the reality is literature is just literature and stats are just an indicator. I’ll try and keep my chin up and not worry about unknown because I can’t change it anyway- should be more appreciative of the present. Thank you

[nstonerocks in reply to KateBush]

You’re welcome. Living in the present is a goal I struggle mightily with. As is often said here, it’s a rollercoaster ride.

[mariootsi in reply to nstonerocks]

Nancy, that's my struggle also!

[nstonerocks in reply to mariootsi]

Im sure it’s very common. I find it takes almost constant effort to put calming and grounding practices in place. I’ve been really bad about that for several months, but trying to get back on track. Restarted therapy and meditation. Working on diet. Wish I could check into a retreat center and just live there!

[mariootsi in reply to nstonerocks]

It does take constant effort. Sometimes it's exhausting! But we keep on plugging along!

[Kakoburr in reply to nstonerocks]

One thing that helps me is meditative activity to meditative music: art work, or working on music itself (singing...piano); climbing rocks is another good one: requires complete attention and focus.

[nstonerocks in reply to Kakoburr]

Sounds great. Anything that requires your full attention seems to work. I am so easily distracted, listening to meditations usually works.

[kearnan in reply to KateBush]

Took me a while to realize I needed to stop doing that also. Everybody is different and the more you read, the more stressed you feel. I stopped goggling and life is better without all that anxiety.

[Teddielottie]

Welcome Kate and I hope all is going well with your palbociclib / Letrozole treatment .As for me... I’m 20 months into the treatment and so far have tolerated it well and have been stable on it , and I wish the same for you too . You will find this site very useful and there are ladies on it who have been on this combo for more than 2/3 years x

[KateBush in reply to Teddielottie]

Thank you . That’s very reassuring . Hugs

[Kateds]

Hello Kate. I've been on the combo since October 2016. Still stable disease and considered in radiological remission. I was diagnosed denovo HR+,Her2- with mets to liver. The largest tumor was over 11cm. These are amazing results in an amazing time in the fight against cancer. Keep on surviving and remember any stats you see online are at least 5 years old by nature. Ibrance is still in its infancy but is already a game changer. 😎👍

[Barbteeth]

Hi Kate

I’ve been on the same as you since June 2018 and bone mets are stable..a liver met grew in size so have recently had it zapped with radiotherapy which has made me feel rubbish...staying on the same drugs though

I’ve also got the COC drugs to try but holding off taking them till after I recover from the radiotherapy

Don’t read statistics or read stupid books that aim to cure cancer...it’s tempting but just like Sandra said in her post there’s a lot of rubbish out there so ignore most of it or it can be depressing

All the best

Barb XX

[Timtam56]

I too have been on same. Was just dropped down from 125mg Ibrance to 100mg dose because I kept presenting with low white bloods at the end of every month.

All here, and my onc also, tend towards the belief that 100mg works just as well. I feel really good and very thankful for this drug combo, this site, and I like to everything.

I asked my onc last visit if her initial guestimate of life expectancy still stood stood now. One year on. She said. "No. I would think you'll be alive for longer than I originally guessed at last year. But as I said then, please don't hold me to it if you live longer." She's great. I think we live in an amazing time.

So. I'm happy with that.

Stay strong and yes. You'll have tough times and easier times. But we are all here fo each other to vent and question.

Timtam

[KateBush in reply to Timtam56]

Hi I also did the round of palbo starting with 125 and then eventually down to 75 for two weeks on and then two weeks off. Am stable now. I’ve never been given or asked for a life expectancy guesstimate from my oncologist, who is really nice, because that I think is unfair. Stats are facts gathered from controlled trials hopefully but life and death is in the hands of something greater and reading on this website , there are cases of miracles too. Wish you lots and lots of love and all of the best x

[kearnan in reply to KateBush]

I would never ask my onco how long does she think I have. I have seen large numbers of women who have had stage iv for at least 10 years. Plus, an onco is not a psychic. One lady on another board posted that she was angry bc she would always ask her onco how long did he think she had to live? He would tell her he had no idea and that she should keep her thinking to how well she was doing on the drug. She then said she was going to insist and again she demanded to have some sort of idea. I guess the onco got sick and tired of her asking him and he said Three months. She then became obsessed with the three months although she had already been with stage iv for two years. He probably got sick and tired of her asking and demanding so he gave her a number to quiet her. They are not God. They cannot give you that answer.

[Red71 in reply to kearnan]

I did ask my oncologist about time remaining but it was more like, do I have a year or less or a much longer time. He laughed and said I had 10 to 20 at least, and probably closer to 20. I just wanted to know if I should finish doing all the things I wanted to do quickly and write notes to my grown kids or if I had “time”, even though I know that none of us, sick or well knows how much time we have.

[Lemur2015]

Hello. I've been on this combo for 9 months with no signs of cancer in lymph nodes and large pleural effusion now small but have developed increased liver lesions. they just switched me to verzenio and faslodex.

[kduck in reply to Lemur2015]

Hello lemur, where you dx with mets in your lymph nodes your original dx or it developed later?

[Lemur2015 in reply to kduck]

stage 2 breast ca in 2015. stage 4 in 2018. affected areas lymph nodes, pleural fluid and liver.

[kearnan in reply to Lemur2015]

I had to stop Ibrance after only three cycles. I am now on lowest dose of Verzenio (50 mgs.) twice per day and have always gotten the falsodex injections. I hated the Ibrance. 150 mgs. of Verzenio was too much, 100 mgs. too much and now on 50 mgs. (twice per day for all dosages) with no break week and my injections and I feel normal. I do not even have to take naps anymore. I feel so so much better on the 50 mgs. of Verzenio than I ever did with the Ibrance or the higher doses of Verzenio. Everybody is different. I am in good place right now with this dosage.

[Evaf]

Hi,

I have been on Ibrance and Letrozole since May 2018, diagnosed de novo with extensive bones met. My first CT scan after starting treatment and changing to a plant- based diet showed no active disease anywhere in my bones. No palpable mass in breast (it was 6cm) so it all has worked well so far. I hope it lasts for a long time!

All the best,

Eva

[Maludagui in reply to Evaf]

Oh my God Eva. This is great 👍 are you on ibrance 125/letrozole ????

[Evaf in reply to Maludagui]

Yes, Ibrance 125mcg, letrozole, Zoladex and Zometa.

[Red71 in reply to Evaf]

We have similar courses. I went on Ibrance/Letrozol in July 2018 and had NED scans in December. I’m on 75 mcg of Ibrance. My lesions were widespread in ribs, back, and hip and one node. My oncologist thinks the quick response to Ibrance is because the cancer is very sensitive to the withdrawal of hormones and that quick response is a good sign of long term survival. I like his thinking!

[KateBush in reply to Red71]

Hey I like your onco too. I like mine as well, of course x

[mariootsi]

Want to welcome you to this wonderful group of brave, encouraging and strong women!

I'm on Ibrance and Faslodex just a little over a year.

I don't read statistics on google anymore. I have learned that each of us is such an individual case that I put my faith in my onc and God to lead me through this!

[SeattleMom]

Hi, Kate!

Taking your same protocol since November 2017 (20 months). Still in remission. 🙏🏻🙏🏻

Linda

[Southside25]

I've been on both 16 months (and a Xgeva shot about every 3 months for mets to spine and sternum). Have reduced Ibrance from 125 to 75. I've been at 75 for the past 4 months and just had my scans, and am still in remission...cancer has not spread. Everything remains stable.

[Mindysooty]

Hi and welcome. Im on same but only on 3rd cycle. So many encouraging stories on here so hoping to be on it for a long time. Please dont google. I used to do it and saw something that completely freaked me out and I went on a downward spiral. Not googled anything cancer related since. Anything you want to know ask on here, theres always someone who will be able to help. Xx

[BARBIE70 in reply to Mindysooty]

I feel the same about googling .I was so encouraged by all your posts and am on Ibrance 125 and Letrozole plus Denousomab injections a for 5 months ,all working and last scan showed stable spinal mets .

I google lobular cancer on Fred hutch web site and cried for 2 days !!

Why did I do it silly me .

From now on I’m going with results and how I feel .

Thanks ladies gor all your love and support and let’s keep positive x

[hdhonda]

Hi Kate,

I am on my 29th month of Ibrance/Letrozole. I don't take anything else. I was taking a multi-vitamin, but noticed that it had Biotin in it so I quit. Blessings, Hannah

[Maludagui in reply to hdhonda]

Hi Hannah 🌺 this is good.

Do you make any change in your diet???

[hdhonda in reply to Maludagui]

Hi Maludagui, I just eat what I want.

[Evaf in reply to hdhonda]

Hi,

What is wrong with Biotin!? I took it for many months and it was ok.

Eva

[hdhonda in reply to Evaf]

I don't know. I read on this board months ago that it doesn't mix well with Ibrance

[Libra48]

Hi Kate and welcome! You have found a wonderful site here with wonderful ladies sharing their stories everyday. I’ve been on Ibrance 125/Letrozole since March. I also get a monthly Lupron shot and a quarterly Zometa infusion. My first PET scan in May was pretty good and my tumor markers dropped. Praying they continue to drop and I can stay on this treatment for a long time. Good luck to you and hope you share your journey with us.

Maria

[NPmary]

Doing well: 18 months.

[Home18]

3 and 1/2 years, still going strong and on the same dosage. It’s so hard to not google, luckily after awhile I just got tired of doing it but the 1st year was the hardest!!

[mariootsi]

I have been on Ibrance and Faslodex for a little over a year. I don't think there is a way to figure out how long we will be on a certain treatment. We are all different!

[kearnan in reply to mariootsi]

I did read once that women who take Ibrance and are able to stay on it for a year, it was likely that they would be on it for a while longer. I know women who have been on it for 36 cycles. Some were in the clinical trials. I had no quality of life on it and my week off was hell yet many of the women said they felt the same on the Ibrance as they did on their off week and others like me said even months later their off week was the worst. I felt like I was only getting three weeks every month bc on my week off I could not even leave the house and I had to take constant naps which I no longer need to do on the lowest dosage of verzenio. Odd though I have been on the falsodex injections since the beginning and that is the easiest part for me. I don't get sick, just a prick in my muscle and I can walk and sit down immediately. Then again, when I had to get my shots for the first time in my butt cheeks (and was feeling scared bc everything was moving so fast) that when I pulled down my pants for the shots the technician's reaction was Finally, something I could work with (I Have a fat butt). that made me laugh. She said you have no idea, some of these women come in with no meat on them and scream when I get them their shots. Fat butts rock LOL

[mariootsi in reply to kearnan]

I'm glad you found that Verzenio helps you! Ibrance is not for everyone. I think the trick in all of this is just to find something that works for as long as it works!

[michelangelina in reply to kearnan]

Thank you for making me smile this morning!

[kearnan in reply to michelangelina]

I was scared that whole day. First time to the Cancer Center and I was nervous about the shots although I am not needle scared or having my blood taken. When I pulled down my pants and the technician said that I made me laugh hard and I walked out with two bandages on my butt and a smile!

[michelangelina]

Hi Kate, I have been on Ibrance 125/Letrozole since May 2018 (I noticed there are a couple of other ladies here who started the same month I did). I had extensive bone mets when I started, but the lesions were undetectable within a few months of starting the medication. All in all, I can't complain! I am trying to take things one day at a time, though--otherwise, I would have a tendency to waste my life worrying.

[mariootsi in reply to michelangelina]

Worry does do a number on us. It is exhausting!

[kearnan in reply to mariootsi]

I am now stressed and worrying much more than the Cancer (which I really don't worry about that much because it is what it is and I can't control that.) But as of this month I am now on Medicare and expected to pay $2,540.00 each month for my Verzenio on Medicare (I assumed Medicare would be just like Medicaid (completely ignorant when it came to Medicare) where I did not pay a penny). Obviously living on SSDI and alone, I cannot afford that so working with an attorney at the Cancer Center to do a pooled trust spend down so that I can have Medicaid as my secondary insurance. In NY you can only have as a single person no more than $869 per month. Medicaid realizes people cannot live on that. So I have to put my excess income (only getting SSDI) $1,550 into a trust that is run by a non-profit. They send it to Medicaid for approval and once Medicaid approves it, I will have Medicare as my primary, Medicaid as my secondary insurance and Medicaid will pay my Plan B and Plan D deductions which are being taken out of my SSDI now. The trust documents have been signed and sent to Center for Disability Rights. They review, (they will take out $1,550 this month for my spend down) in addition to Medicare taking out their premiums. Medicaid has to see that I am actually putting money into the trust before its sent back to them for approval. That money in the trust will NEVER be sent to me bc then I am over the limit and will lose Medicaid. So I arranged for my rent to be paid by them, my Verizon bill is now mailed to them, and my credit card. They do not pay debit cards. They do not pay for cigs, alcohol or firearms. But they will pay my bills and keep me under the limit for Medicaid. Once it is all approved by Medicaid (another month), then Medicaid will pay the past three months of my unpaid medical bills, I will eventually get back the money I had deducted for Medicare, I will get back my free car service to and from the doctors, and whatever Medicare does not pay, Medicaid will. It's the only way to go for someone in my situation. Its called a pooled trust spend down and many are not aware of it.

[mariootsi in reply to kearnan]

I a0lso am on Medicare and Medicaid. It's the only way to go to get these meds paid for.

I am on very limited income also and on Husky D, Medicaid in Connecticut. It is a spendown also. Thank God!

[hurricaneheather]

Ibrance 5 years this month. Letrozole a few months, then Anastrozole totaling five years this month.

[Evaf in reply to hurricaneheather]

Wow that is a long time! does the hair thinning get any better with time?!

Eva

[hurricaneheather in reply to Evaf]

yes, and i am grateFULL! to clarify, i am beginning the fifth year of this first line of treatment. for me, the hair thinning has become better.

[Evaw in reply to hurricaneheather]

I know it is a 'superficial' concern as we should be happy to be alive! But it makes me feel better that the hair thinning improves somehow xx

[Red71 in reply to Evaw]

I agree that hair thinning is a superficial concern but for some reason it hit me hard too, maybe because it is an outward sign of a disease that no one else can see. And because I had really thick hair! After 7 or 8 months I stopped losing hair and now at 13 months my hair is really starting to thicken up again. There is hope!

[KateBush]

Fantastic. That’s hope . Keep doing well x

[kearnan]

I agree with you. I have never taken a vitamin or supplement in my life. I have eaten the same since I was in my 20s (now my very late 50s) and have not changed my eating habits. I feel better with drugs that are investigated at least a bit by FDA than walking into a Vitamin Shoppe and seeing hundreds of bottles of God knows what. Until I was diagnosed in 2017, I rarely, if ever, went to doctors. I never spent a night in a hospital and I was never sick except for the occasional flu. All this without supplements. A woman I worked with at the time believed in all these pills and supplements. She would carry a bag with her to work every day and took about 20 "natural" things. Would only use organic soap, toilet paper (expensive) and yet she was constantly getting sick.

[Hidden]

Letrozole was started February 2018 and Ibrance April2018. No change in my cancer. Stable but no improvement

[Evaw]

Thanks, Sandra xx

[viennagirl]

Hello Kate. I also slip between wanting to know and not wanting to know. I am very much into meditation and believe that it will help me stay calm and not worry too much. I think worry is hard on the immune system so telling myself during meditation that I am healing might be useful in reducing the worry.