IBrance Vacation?

[Dragonfly2]

I’ve been on IBrance 100 and Anastrozole for three years and my scans so far have shown stable disease. I’ve tried to stay active with golf and walking. We took a trip to Texas and it was go go go for a week, one can say I have nothing to complain about…however, my tumor markers have been rising for this past year and my hip (site of the bone lesions) is aching. Yes, I’m thinking that IBrance is starting to fail. And my fatigue is also rising. Has anyone taken a vacation from IBrance to reset its cancer fighting effects? An oncologist(second opinion) told me a couple years ago that sometimes a break from IBrance can work. Any thoughts? My current ONC has been tracking my progress and is still feeling oK with my treatment plan …

[Aprilfoolz1]

dragonfly , is your cancer ILC or IDC ? When was your last scan ? From what I've read ILC doesn't always show up well on scans . So if you are ILC I'd research a different method of surveillance. If nothing new is showing on scans and you are IDC I would sit tight . Can they radiate your hip met since it's painful ? I have read that radiation to a bone met will "kill" it or something like that , and reduces pain .

[Dragonfly2 in reply to Aprilfoolz1]

Thank you for responding. I have ductal carcinoma…with bone metastasis…yes, I did have radiation 3 years ago because I could barely walk,,,the iliac was spongey! And it helped a great deal…I hope they can do the radiation again if I need it. 🤞. I will see ONC the beginning of September so we’ll see if these rising tumor markers mean anything 🤷🏼‍♀️ thank you again for that added info. 🙏

[Aprilfoolz1 in reply to Dragonfly2]

Send your oncologist a message, maybe they will order a scan earlier ? I have had hip pain for a few months and X-ray was clear (I don't have not had bone mets). I do get faslodex shots in both hips. I saw an orthopedic doc and I have an inflamed SI joint so am doing PT. So far it's working pretty well ! Hoping your hip pain is not cancer related !

[Dragonfly2 in reply to Aprilfoolz1]

thank you for telling me about your experience,,,sometimes when you hear hoof beats, it may just be horses, not zebras. Best wishes!

[Aprilfoolz1 in reply to Dragonfly2]

True , but many of us have heard hoof beats and it WAS a zebra so it's hard not to go there keep us posted on what your onc has to say and any scan results !

[Dragonfly2 in reply to Aprilfoolz1]

Thank you I will… looks like my tumors keep rising and my ONC is ordering earlier scans. Hope it’s inflammation from the SI joint.. snd apparently inflammation can raise tumor markers too 😢 I’ll keep you guys posted !

[Nocillo]

I’m about to change treatment since Ibrance is beginning to fail for me. I’ll ask about a re-start of Ibrance after a break and see what the onc says. A lot of doctors don’t believe in tumor markers, but mine were rising and yes, it was due to a new appearance of cancer. I believe in them!

[Dragonfly2 in reply to Nocillo]

I’m afraid I believe in the markers also…as the hip hurts more, the markers rise. I feel the connection! Looks like it’s time to write to Dr. Mary Chamberlain at Dartmouth Hitchcock Medical Center and get her opinion…🙏🙏

[Rbeth]

I was on Ibrance, other meds, Piqray and now Orserdu. No Fulvesterant shots with this drug. I had 6 1/2 years of shots. Over 75 per side. Pain all the time. It builds up. Orserdu was just approved in February 2023. Side effects for me was nausea. Got that solved. More energy than any other cancer drug. Ask about it. Piqray kept my cancer numbers down but gave me diabetes and low energy. I have had breast cancer since 2009 Lumpectomy and now breast cancer in my stomach lining and rectum

Good luck on this leg of your journey.

Reenie

[Dragonfly2 in reply to Rbeth]

Thank you for the tip about Oserdu! Best wishes…..

[Nocillo in reply to Rbeth]

Do you have lobular or ductal in your stomach lining?

[Dragonfly2 in reply to Nocillo]

Neither… it’s all in my bones

[Nocillo in reply to Dragonfly2]

I meant that for rbeth. 😬

[love2golfwell]

I'm sorry you are going through this pain and that the markers are rising. I know how much you enjoy playing golf and being active. I'm hoping your doctor can figure out a good solution for you. I also hope that radiation could help with the pain. Please keep us posted about what your doctor says and also if you end up trying an Ibrance break to reset its efficacy. That would be good to know. Sending you hugs and prayers.

[Dragonfly2 in reply to love2golfwell]

I will definitely keep the group updated…such a journey we have 🥹

[Godbeforme]

I was off Ibrance for over a year and it worked great again for me; the onc had no problem restarting me on it, and thank God, it's still working as my markers continue to drop. I take the 100 mg. whereas before it was 125. God bless you and heal us all in Jesus name, amen! I just heard yesterday about a miracle pill that eradicates tumors! Could the cure be HERE at last? <3

[Danie-in-Montreal in reply to Godbeforme]

After 5 years on Ibrance + Letrozole, and stable, I'm thinking of taking a break/vacation from Ibrance. Can you tell me they reason you took a break, please? And why you started again? Thanks.

[Godbeforme in reply to Danie-in-Montreal]

I had quit because of chest pains I thought were caused by the ibrance but found out later it was the Letrozole! Hope this helps <3

[Dragonfly2 in reply to Godbeforme]

So good to hear!!🥰

[TammyCross]

I presented my oncologist with some research from Dana Farber about Ibrance working again after a vacation. She batted it aside and said, "It is not standard of care." Two nurse practitioners who work with her, however, grabbed the article and were fascinated. I hope your oncologist is more open to new info.

[Dragonfly2 in reply to TammyCross]

When I had asked my ONC if I could skip a week or two, she seemed OK…yiu see I’m taking it on an alternative schedule of 5 days on and 2 days off. Without a break. She made me promise to never skip anastrozole. 😇

[TammyCross in reply to Dragonfly2]

That is different. My onc let me skip Ibrance and now Verzenio for weeks or a month. The question here is if Ibrance fails and you go off it for 7 months, will it start working again? Seems to be yes.

I would like to skip anastrozole, but no.

[Dragonfly2 in reply to TammyCross]

Tammy, what would you take in addition to anastrozole while you were off the IBrance for several weeks/months?

[TammyCross in reply to Dragonfly2]

I don't know! I think nothing. I would consult with Dana Farber -- and plan to when Verzenio stops working. It does seem that 7 months is a long time to be off a targeted treatment. My cancer is "indolent," however, and my "cancer burden" is low, so nothing happens quickly.

[Hidden]

Hi

I had to take a break for 2 weeks to reset...everything is stable now..I had low cell counts..

One year in to same med Letrozole 25 Ibrance 100 was lowered to 75 ibrance

Cancer in my lower back L4 or 2 can not remember...last Ct scan they found two tiny white spots on my lung they are not concerned about.

Will no more next scan Sept 9th

The meds seem to be working...do not feel much back pain ..I work 8 hours a day .

Sitting is the only time if to long ...lazy sitting before this comfortable

One and a half year ago..I was limping really bad so much pain on my right hip...they did radiation on a tumor that was blocking the nerve ..I was using a cane to walk..

I asked them can you fix it ..I will take all my meds.. lol was any way.

after a few weeks no cane...pain gone

Hope this helps

Question your Doctor on this ..they did a xray and I was done in two weeks

We are allowed 3 radiation treatments...so if l feel any real bad pain l take a quarter Tylone 3

or half ..pers from doctor and good to go...can make you sleepy

The meds seem to be working....eats lots of Broccoli :))))

[Dragonfly2 in reply to Hidden]

Two weeks off was something I was doing when I was on the 21 day cycle…I was a mess on days 19 through 28 and so would take another week off to recover from neutropenia…since I’m on the 5 days on and 2 days off cycle without a break, I think I may be due for a break. Thank you for the info about radiation. It had worked so well for me three years ago…I’m hoping that if things get bad I can count on it again. Many thanks!

[Hidden in reply to Dragonfly2]

Welcome...I am on 21 days 7 off it works till I go off Ibrance.. Letrozole is not nice to my back...Look forward for 7 days end.....Stay Happy Enjoy life

[Hidden in reply to Hidden]

Forgot Had no Chemo ..Radiation on top of breast good for one year was told clean margins all good..When I went to see the surgeon that operated on me about the cancer in my lower back...His words were ice cold.....This is a waste of my time ...so one got away...he was mad because he told me never happen got it all...he got the report ..no call back nothing ...I was so down by his words...that was over 2 years ago I am over it but never forget the ice words...Stay positive.. I do ..I am single and men ghost me when I tell them no second date...I do not take it personal ...its their problem😂

[Dragonfly2 in reply to Hidden]

I’m so sorry minou! That surgeon should be sanctioned for the way he spoke to you. And your experience while dating is heartbreaking. I know that you must feel it’s best to be upfront …but people can be so selfish and never consider the effects of their actions. You’re right…it is their problem and one day Karma has a way of paying them a visit, best wishes!

[Hidden in reply to Dragonfly2]

Thanks ..l have my 2 Shih Tzu..lots of luv from.them ..Even men with BC can be the same ...been there too..lol

Hugs

[Figletf in reply to Hidden]

What a jerk that surgeon must be😲Stay positive it has been scientifically proven that positive thinking aids with healing and reducing pain.

[viennagirl]

Hi Dragonfly. Sometime ago one of the women on this site (I believe) said when her Ibrance stopped working her Oncologist took her off of it for a couple of months and then started her on it again and it started working for her again. I think it might be a good idea for you to ask your doctor if this is something you could try. Let us all know what you decide. It is important to do the right thing for your body. Best wishes Marlene

[Dragonfly2 in reply to viennagirl]

Yes, time to bet a second opinion for sure!

[Eliactida1955]

I was told it can work but not along break. There was a study done up north as olive in Texas and I read about it. my two onoc ologists didn’t want to do it and I had been off a year. It didn’t work for me but I feel I quit it too soon.8 should have stayed on ibrance and monitored in beginning. Later on my onc told me sometimes cancel cells shed and cause the markers to go up. Ibrance worked for me for over three years. I’m now on xeloda and will take marker in two weeks so we will know if it’s rising. Don’t be so eager to change from Ibrance.I have stage 4 breast with met to bone s .left hip and spine but stable at spine. I wish you the best. I must mention I never had I v chemo or radiation and no surgery . Diagnosed since aug 2018. It’s been a trip-take care🙏✝️🌹

[Hidden in reply to Eliactida1955]

Agree stay on ibrance...

[NPmary]

I have not done that. My advice would be to Google scholarly articles regarding this research, I would consider what I learn from that research, others' personal stories, discussion with your doctor and your own feeling. Other reasons for bone pain besides cancer are inflammation, arthritis, changes in air pressure/barometer rising. Wishing you peace. 🌺

[hopenowandtomorrow]

Yes, about 18 months ago, I took a break from Ibrance for 7 weeks. The scans I had indicated some spots near my sacrum. After restarting, I have had all clear scans since. I’ve been on Ibrance, Faslodex & Xgeva since April 2019. My original MBC tumor was in the left acetabular pelvic bone.

If you go to my previous posts, I provided the link from Dana Farber on their great results with this.

I pray it works for you!

🙏❤️🙏

[hopenowandtomorrow]

Here’s the Dana Farber article I referred to: healthunlocked.com/redirect...

🙏❤️🙏

[Dragonfly2 in reply to hopenowandtomorrow]

Thank you for the link..I did read that earlier...and it explains why a break works for some and not for others. That acquired resistance versus genetic resistance is the key and if it's a genetic mutation that makes resistance permanent, there is no hope to return to Ibrance. Best wishes!

[13plus]

This situation sounds just like my experience. I took iBrance for total almost 3 years but TM actually gradually rose over a period of close to a year and bone progression advanced over a period of 3-6 months with similar symptoms and some occasional nervy sensations as warning signs. I then went on Lynparza for 12 months, progressed to liver. After that I opted for a trial of all these drugs combined. IBrance fulvestrant and Lynparza (felt fine) but it didn’t work. We stretched it out to 6 months but I had to come off. Now I’m on Afinitor and Tamoxifen and feel great! I’m just about 1 1/2 months in, bloodwork is great but TM still climbed. Hoping the scans will be good despite TM numbers, later this month!!

So a year off the iBrance didn’t help me but who knows, it might work for some

[Dragonfly2 in reply to 13plus]

Thank you for your thoughtful response...there are no easy answers but Im glad you seem to have some success with the current treatment...best wishes.

[awesome4ever]

I personally don't think there is any real world evidence to support this. I know all about the small test that was done at Dana- Farber by Geoffrey Shapiro in 2019. This was a promising laboratory study done on cells in a petri dish as well as tested on a few mice that had been given MBC. As far as I can see this is the extent of the studying that has been done and no human testing. I certainly can understand why though....I can't imagine being the genie pig that would stop therapy. I know the term 'standard of care' is sometimes frowned on by some but at least it protects Stage 4 patients from being the ones that could receive a placebo and not get the 'standard of care' drug along side it. Ethically that would be a nightmare. The full article published in Cell.com is a good read if anyone is interested.

cell.com/cell-reports/pdf/S...

You are 3 years into your therapy ....well done for that. I would be extremely surprised if your oncologist would agree to the 'Ibrance vacation' without perhaps getting you to sign a waiver should cancer progress during the time away. I understand that you would continue to take your AI but there are many studies that show in MBC patients particularly the incidence of developing the ESR-1 mutation in around 30-40% which is very high. Just something to think about around the AI's being the work horses of treatment in estrogen positive cancers. I totally agree but have to keep the resistance part in mind too if that was going to be my only therapy.

You referenced a second opinion that said " that sometimes a break from Ibrance can work". It would be interesting to know why he felt comfortable saying that and what documentation he might have to support his words?

Anyway my thoughts are that I would personally not risk this 'holiday from Ibrance' for 7-8 weeks. Cancer is very smart we know that. All you at present could base your decision on would be anecdotal statements with nothing being evidence based. Too risky in my opinion but of course everyone has to do whatever feels right to them. Personally I had to be off Ibrance after 5 years for 6 weeks following surgery for pathological fractures. My first scan following showed progression and I can't help wonder if it was because of my time off Ibrance?

Good luck making your decision. Take care.

[Dragonfly2 in reply to awesome4ever]

thank you Awesome...i can understand and share your concerns..which is why I wrote to the group. What I find truly dispiriting are the reports that suggest that Ibrance does not add substantive protection or therapy as frontline care

fiercepharma.com/pharma/asc...

this was from June of 2022...and I just shut down the site thinking it was such a slap in the face for us who are betting so much on this drug. Well, the AI is certainly the heavy lifter for sure. But I'll be following any more studies on the idea of resistance...though apparently there are other drugs newly available that may make the whole point moot.

Best wishes and many thanks!

[13plus in reply to Dragonfly2]

You can get a blood test now for the cancer variants/mutations and that woul dshould show of you have developed the AI resistance, the Guardant360

[awesome4ever in reply to 13plus]

Totally agree with you if you are lucky to have these tests covered. I live in Canada which is a government funded healthcare and for me to get this test would be close to $8000 Canadian out of pocket which is costly. So we have to make our decisions based on how we respond to medications as opposed to these more specialized tests unfortunately. Regardless the approved Serds that target the ESR-1 mutation is not covered either at this point. Take care.

[13plus in reply to awesome4ever]

I blindly let my husband encourage me to "not worry about" the cost/coverage for the test . But later I saw the pending charge via my insurance site 😳, and now I'm too worried to look at the outcome! Admittedly it didn't tell me anything new either so just a waste at this point, as it turns out. Well maybe that's still good news! As in, my cancer seems to have not changed mutations since my dx mets

[Dragonfly2 in reply to awesome4ever]

Oh, I’m so sorry to hear this about Canadian healthcare. I pray that you are able to get what you need to thrive. While American healthcare insurance can cover many expensive therapies, the lifetime cost of this insurance can be extremely high. It’s a business and I sincerely believe that cancer care is one of the most lucrative enterprises in the world. 36 months of IBrance is north of $600,000… someone is making a lot of money. As long as the money rolls in, we will have cancer research and I pray that there is a breakthrough in our lifetimes that will help us all. 🙏🙏

[awesome4ever in reply to Dragonfly2]

All I can say with the options that were available to me where I live if Ibrance wasn't one of them I would have probably already succumbed to this disease. Interesting article but as with many there is a certain amount of bias that can play into things and really who the sponsors are. So even though sadly Ibrance has failed for me now I am grateful for the time it has given me.

[CyndiA]

I've been on Ibrance for 4 years and have taken a few holidays. I think it's s good idea.

[Danie-in-Montreal in reply to CyndiA]

Can you please be a bit more specific?.... How many holidays exactly (what is "a few2)?... How long did each holiday last? Thanks!

[hurricaneheather]

i take Ibrance vacations. i am a proponent for them. i believe they are a contributing factor to why I am still on the first line of treatment and NEAD since Mar 2016. and, i’m a proponent for tumor markers, as they were the indication that the cancer had metastasized in July 2015. tumor markers vacillate for a myriad of reasons. i have all three markers checked three times a year with the blood draws. additionally, i am having quarterly ctDNA blood draws for two years; just finished draw four (of eight). thus far, all “0.00.” there are still aches and pains, as well as collateral damage. beyond thankful for the blood work and scans that quiet the mind when it is ‘achy.’ i remind myself it is the collective test results that provide the overall health and wellness during this diagnosis. it sounds like your onc is utilizing that approach. may you be at ease while you endure ‘this’ and await the confirmation that is needed.

[Danie-in-Montreal in reply to hurricaneheather]

Can you please be a bit more specific? After 5 years on Ibrance, I would like to take a short vacation... When you say you are a proponent of vacations, what exactly do you mean: How frequently do you take a vacation? How long does it last each time? Thanks!

[hurricaneheather in reply to Danie-in-Montreal]

i responded to the other post as per your inquiry.

[love2golfwell]

Wanted to check up on you and see how you are doing. Been thinking about you. Hope you are doing okay and still playing golf. Sending you hugs and prayers.

[Dragonfly2 in reply to love2golfwell]

Thank you for asking! I’m dealing with low back pain and hip pain. My tumor markers have been rising and my ONC is calling for scans early to decide if I should continue with Zometa. It’ll also show if the pain is from progression. 😭. But she feels hopeful. I’m feeling like, Oh well 🤷‍♀️ I’m nervous for sure. It’s scary and discouraging. But not the dnd of the road. 😇 thank you again ! Hope all is well with you 🙏🏻

[JustmeMary in reply to Dragonfly2]

I was reading about your tumor markers increasing and curious what your number is. Mine have been increasing slowly for about 9 months and currently I’m at 79 but my oncologist doesn’t seem too concerned.

[Dragonfly2 in reply to JustmeMary]

Well in July of 2020 when I was diagnosed my CA 15-3 was 96. In May of 2021 it was 26 where it hovered for about a year and then slowly rose. This past month it’s at 65. I guess it’s not terrible but the rise has been steady and now I have a debilitating SI joint pain. Eating Tylenol and Naproxen 3 times a day. Makes me feel so old and sick…all of a sudden. Scans tomorrow will tell the tale…I think!🤷🏼‍♀️. Either way I’ll need to address the pain. MyONC seems to feel that TMS go up and down…but there hasn’t been a down for a while 🥴

[JustmeMary in reply to Dragonfly2]

Thank you for responding. Good luck with scans today! Let us know how it goes. 🙏🏻

[love2golfwell]

Thanks for responding. I'm sorry about your back and hip pain and also the rising tumor markers. I'm sure the scans will give you and your doctor good information about what is going on. I am hoping it is not progression. How long have you been on Zometa? I opted not to take that or Xgeva. The side effects scared me so much. I always hope it was the right decision. My doctor was not too happy with my decision. It is good your doctor is hopeful though. I'm sure this is very scary for you, but I hope that you get the answers you need and feel comfortable with the next steps. I know there are lots more options for treatments, so try to stay positive. I am doing okay. I had bloodwork over a week ago and meet with the doctor this coming Wednesday. Although I can find my results on the portal, I never look at them. I wait to see her. Hoping they are good. I will keep you in my thoughts and prayers. Keep me posted. Sending hugs.