NED

[Bailey3266]

I know I shouldn’t be but I am hesitant to post this; but it may give newer Stage 4 Mets people better outlook; I know I was scared to death for past 2 years. I was give “no radiographic evidence back in March; which actually allowed me to ease up on every 3 month CT Scans & the Scanxiety that goes along with it before and after the scan; not helping that the scan was always on my “off Ibrance week-which is always my worst 7-10 days of the month.

Well, here goes (sorry for those whose Ibrance or letroziole has been discontinued or altered for one reason or another; I do know I’m always happy to read when this medication is working for someone & I read it’s also going to be used for different types of cancer soon, I think?):

Good news to share:

I’ve just been on Ibrance/letroziole 20 months and got NED today!

My new UCLA doc was involved before 1st trial and knows personally of @ least one lady who has been on Ibrance for 8+ years; so even though we were told that mean average is 22 months; I believe that has changed over time and I think one lady in this site is @ 3-4 years on it!

?? Is Taxol the next step or are there other pills before that? Has anyone been given or are there discussions about Immunotherapy which, I guess is the Big Guns in this fight/battle whatever it is we’re all going thru?

One more “ADD-type” thought (I know I ramble and am scattered thinker): see now I can’t even remember what it was? Anyone else forget near everything—weird side-effects happening I guess? Had brain scan bout year back with - negative results!

I remembered, we are relocating from Boston to Central Coast California—absolutely beautiful year-round here! Any thoughts/tips on relocation process. I have a 20 year-old and 18 yo (who is taking it harder despite waiting to actually move and commuting to n Fri for the past year!). Though high school is complete; we are still in process of listing our home if 23 years—bittersweet-though. I’m going to Boston after extended stay Jan-present in California; it’ll be nice to say goodbye; but tough also; so I thought I’d drive around and take pics of “growing up” memories and things & giving a book of pics to each child & hubby! Suggestions besides the usual: local diner & eateries we frequented, beaches, our house from all angles, elementary & middle & high school, etc??

Thanks for thoughts & ideas!

Thinking of everyone tonight and directing my prayers and best wishes for prolonged use/effectiveness of whatever Med therapy works for others!

Fondly,

Kerryanne.

[Francesca10]

Kerry Anne

First that is great news that it is NED!!!! We can’t pay much attention to statistics- each of us is different and will respond differently to any Med for this bitch of a disease. There are many long timers on this site.

Second I have been told xeloda would be next if ibrance/faslodex fails. I have not achieved the results you have; my recent pet results were stable, no progression, no new Mets, decreased activity in most Mets to bones. I hope one day maybe I will get those results but am grateful for where I am now.

I wish you the best in every sense♥️♥️

Frances

[Bailey3266 in reply to Francesca10]

Frances:

I’ll keep you in my thoughts and prayers on the newer remedies to come. My mother in laws name is Frances & I want Ted to name my son Frances; but he got Nicholas!

Thanks for sharing and for thoughts!

[Teddielottie]

Great news that you currently have No Evidence of active Disease and I hope it continues for a long time , until new even better treatments are available !

Just been reading about the Institute of Cancer research and UCL Cancer Institute , London, new study , combining Palbociclib (ibrance) with Crizotinib (a lung cancer med) and the approach looks highly promising , according to their Professor Paul Workman . (so far the combination therapy was used against human tumour cells placed in mice ). And it may help kill other tumours , including lung and bowel , according to scientists .🤞

[Hidden in reply to Teddielottie]

That does sound promising! Ibrance was never added by my oncologist though, so this combination would probably not be an option for me. Hopefully something else will come along for those of us just taking letrozole or something else.

[Teddielottie in reply to Hidden]

Hopefully Ibrance will be offered to more people in the U.K. as the results become known 🤞

Anyway , think you are doing everything you can to help yourself and you deserve some great results ! I have stuck with conventional so far as I have had good results , but who knows for the future , so I am keeping my options open x

[Hidden in reply to Teddielottie]

Yes, it probably will, but I don't think it will be offered to me as a second line of treatment, as it seems to be used in conjunction with letorozole. I am already on letrozole. So I think the ship has sailed. I asked my oncologist why I was not offered ibrance and she basically said it's to do with cost! That annoyed me. I was premenopausal when I was diagnosed, but I have heard of many other younger women who have been put on it. She did agree that it can extend progression free survival. So to me that shows my life is not as valuable as other people's, which is why I have been so proactive with other things I have been doing. When (not if!) I am cured, it will not be down to my oncologist.

I agree that it is good to keep your options open. That's how I feel too.

[Julie2233 in reply to Hidden]

Ibrance is also be prescribed with fulvestrant (faslodex) so this might be an option if you have to move away from from letrazole.

[Hidden in reply to Julie2233]

Hi Julie,

Thanks for that! I appreciate it. My oncologist mentioned that faslodex would be the second line of treatment if and when the letrozole stops working. She didn't mention adding ibrance with it though. But I am hoping not to have to worry about that for a long, long time!

Thanks again,

Sophie

[Julie2233 in reply to Hidden]

Reading the posts on this site, letrazole seems to get good results by itself so hopefully it will continue working for a long time.

If you are in the uk not all NHS authorities will prescribe ibrance or faslodex (which is why I'm with a hospital in a different authority area) but you can appeal and ask for it on the grounds that there is evidence that it prolongues the usage of other drugs. You need to find out from your oncologist why its not being prescribed. Our postcode lottery for drugs is so wrong, it's supposed to be a national health service.

[Hidden in reply to Julie2233]

That's what I'm hoping, Julie. Yes, I'm in the UK. My oncologist admitted I'm not on ibrance because of the cost.

[kearnan in reply to Hidden]

I was also put on as my first line of treatment Ibrance with falsodex in US I do know a younger woman in her 30s who is on Ibrance with letrozole and she has been traveling non-stop. She went to Japan, China and now Alaska, all in one year. My onco told me this was the first line of treatment usually used Ibrance and falsodex. The ibrance did not work for me bc of low white blood cell count and I felt awful on it during my week off (although for many, it can work a long time). I am now on Verzenio (50 mg. twice per day with no weeks off) but still get my falsodex monthly injections. This med at a lower dose (I was on 150, then 100) seems to work better for me. The higher doses I had problems with the side effects. The lower dose is going fine.

[Sunny2020 in reply to Hidden]

I was told it only works if your post menopausal so my Onc had me get surgery to have ovaries removed.

[Hidden in reply to Sunny2020]

I was also offered an oophorectomy, but I refused. So I have zoladex injections every month, along with letrozole, which both put me into the menopause. My oestradiol levels had tapered off after two weeks of my first zoladex injection, which is when my oncologist introduced letrozole.

Sophie x

[mariootsi]

Kerryanne,

Amazing to hear you are NED! Congratulations! Celebrate!.

The best to you in California. Lived in Hollywood for six years. The weather is unbelievable. Helps so much with mood instead of dealing with the weather in the Northeast.

[Becca65]

Wooo hooooo! Great that you are NED! Hope you stay NED till we have a cure!

[blms]

KellyAnn,

First, you are lucky to have UCLA to be seen for oncology. It is now considered by some professionals to have taken MDAndersons #1 spot. In addition, I have a good friend who just began in oncology there, awesome young man with bright and compassionate approach to care which I hope is a good sign to come. His name is Dr. Scott Colton, should you come across him when visiting your oncologist.

Congrats on controlling your cancer. I have been in this positon for the second time in my life with BC. First 22 years ago, stage 3 and in remission from that journey for 20 years. Now, stage 4 since September of 2017 and in remisssion, NED, since actually only a few months after that in January of 2018. I have trace amount of plueral effusion shown on last CAT so we will see if that amounts to anything, or not, in the next couple of months.

Also, make sure you have some protein, even if it is found in brocolli, each day. There is de bate about protein as it turns to sugar but I found that I need some while on treatment to help with energy (although I understand that is more carb, etc.) I do well with a bit of rice as well.

[Bailey3266 in reply to blms]

Well thank you about the daily protein; I love green veggies too. I’m retired and my children are 18 & 20 so when I’m tired it’s ok for me n my 3 yo pug (who sleeps frequently as a routine) to rest as much as needed. I’m in Central Coast Calif—SanLuis Obispo County (recent Keneally Reeves movie filmed in Paso Robles CA; “destination wedding” I’d recommend that) but that’s where I live but in the Coast. It’s nice for me as I still have a touch of hot flashes not near as much as the 8 years as I went thru menopause. But there’s always nice see breeze! Also the movie Sideways went thro Paso Tobles also; fun lite movies are my enjoyment and long walks on beach with my dog. Just got a recumbant bicycle (see pic) & that helps with a ton of my ailments: muscular issues from letroziole (along with glucosamine chondrointin) insomnia, depression, anxiety, severe bilateral knee hands and feet.arthritis, etc—I’ve been using it 2-3 xs a week & feel if I get up to 5 xs a week that’d be great.

Well I cannot paste pic; but if you google it I highly suggest trying to get one even a stationary one if you have any of the issues I have. We chose a trike as I’ve had a few too many falls in past year; luckily no broken bones but scary n painful just the same. Is that a side effect of I/l therapy? If not I think it’s my mind since turning 55 I have cloudiness and forgetfulness like never before//may also be due to empty nest—thoughts?

[RLN-overcomer]

Enjoy your NED C-E-L-E-B-R-A-T-I-O-N with your loved ones. Try no to worry about when the medication will no longer be effective. Nobody has a crystal ball , and everyone responds to certain drugs, and drug combinations differently. Besides there will be better drugs with less debilitating side effects available that will stop or cure breast cancer right around the corner Amen. This is a time to C-E-L-E-B-R-A-T-E with your loved ones, and look forward to your new living location. XoXoXoXo

[kduck]

Congrats on being NED!

[Kimr2081]

Thar is awesome news. And I love Central California. I live in So California but my company has a big client in Central CA and I am actually there doing some work this week. I will be starting Ibrance again this month. The again part is a long story so won't bore you with the details but hoping it works. I am coming off Xeloda.

Kim