New on Ibrance,not sure if I want to stay on this drug. Tried others they were not working after a few months. I get 2 shots in behind ouch

[Hopkinton7]

IM A 25 YEAR SURVIOUR. HAD SEVERAL REOUCCURANCES,NOW ON HORMONE THERAPY. TRIED OTHER THINGS,ON NEW DRUG, NOT SURE IF I WANT TO STAY ON THIS. DONT LIKE ANY DRUGS,BUT HAVE TO STOP FROM SPREADING.. NEVER AND WONT DO CHEMO, NOT EVEN A SUGGESTION. JUST LIVING LIFE EVERYDAY....

[Barbteeth]

Hi there

I know how you feel about taking these drugs

I remember looking at my first ever Ibrance pill and thinking this is poison!!

However I took it and now on 6th cycle..know if it’s worked after my ct scan in a few weeks

The thought of chemo fills me with dread..I remember my appointment with the oncologist after the biopsy and I was so relieved I would be on hormone treatment. I had said to my husband I would no way have chemo and I still feel the same.. however I might change my mind I guess if there was no other way..depends how crap I feel

Barb xx

[Teddielottie in reply to Barbteeth]

Ditto Barb...

Every month , dressed for the gym , I go to the chemo ward at my local NHS hospital for my bloods checking for ibrance and I feel I shouldn’t be there... a dozen plus poorly chemo patients are sat in their allocated spaces having their hours of chemo. I only stay for 20 minutes while my bloods are taken / checked and the next months supply of Ibrance / Letrozole is brought up to me from the hospital’s onsite pharmacy . I actually feel guilty taking up one of the chairs! It is then I realise how fortunate I am to have been given the chance with Ibrance just as it was approved on the NHS here in the U.K. exactly a year ago ! So far , so good (even with a few side effects which I tolerate) and I hope it continues ... for us all xx

[sillygurl1994 in reply to Teddielottie]

Hi what are youe minor side effects

[Teddielottie in reply to sillygurl1994]

Hi ! Are you on Ibrance / letrozole ? My side effects (after 15 cycles ) from the letrozole are occasional warm flushes and a bit of joint stiffness when inactive and some weight gain earlier on . With Ibrance I have thinned hair and more tiredness at times of the cycle and the ocassional mouth ulcer . But I have learnt to pace myself , I walk daily and do stretches . I keep hydrated and eat a balanced diet ( tho I’m vegetarian but eat dairy ) . I have so far taken no supplements . I have a six monthly scan due mid March and hoping for as good results as in October ( when I had no active disease) .🤞I hope the same for you too x

[DDIL1 in reply to Teddielottie]

I just started Ibrance and Letrozole. I wondered if it’s still working for you? I was thinking of switching to Kishquali? Love to hear your experience.

[Teddielottie in reply to DDIL1]

Hello ! This looks like it is from a very old post three years ago . But I can update you … I am very fortunate to have had a good run with Ibrance / Letrozole ( 4 years 3 months on this combination , my first line of treatment, and completed well over 50 cycles Ibrance 125mg ). My bone mets have been ‘ stable ‘ from the first post treatment Ct scan . I have always had 6 monthly Ct scans , my ca 15/3 has stayed within range and I don’t have any pain issues ( which I had for the first few months of starting on this treatment). I have had many of the listed side effects , but have always managed to find ways around them ( with lots of advice and support from the ladies on here ) . I have so far not had any radiation or chemo 🤞.

I know that it is these two traditional meds that have given me these results as I have not tried others , nor alternative medicine nor the many supplements available out there . I asked my onc about them very early on and she said since I was doing well and everything was in balance , why rock the boat? . I just eat a fairly balanced diet but have treats daily …I have always been vegetarian ( but this itself didn’t stop me getting bc !) , I try to avoid stress and I get outdoors in nature and walk / or ebike in good weather . I rest when my body tells me to and I always have a bottle of water beside me ( even at night ) .

I’m hoping I can continue on this combination for sometime yet , but I am a ‘realist’ and know that I will have to change meds at some stage , when the cancer cells outsmart the current meds .

I hope this helps in your current situation , but do ask on here if there is anything else . Take care! x

[DDIL1 in reply to Teddielottie]

Very helpful. It’s still working for you. This is just a roll of the dice on which is the best med. thank you

[Ange0901 in reply to Barbteeth]

Interesting that you’re on your 6th cycle before they’re giving you a ct barb. I’m only half way through my 4th and my first scan is this Friday. 😳😳😳

Dreading it. Sure I can feel pain in my liver and my ribs are feeling tender.

Xx

[Snowcone16 in reply to Ange0901]

My oncologist originally had me set up at 6 months. I was feeling bruised in my ribs and asked to move it up. He was in agreement with my request - it was 4 months.

🤗

[Ange0901 in reply to Snowcone16]

I’m assuming the pain was the liver mets? It’s an odd feeling. I’ve only had it a few days and today it seems to be easing off a bit. I can only feel it when I touch my rib. Worry head in full swing due to upcoming scan. 🙄

[Snowcone16 in reply to Ange0901]

Honestly, I’d say no. It was sore a day or two when I called to move up scan. But then it went away. I kept the scan appointment anyway. It showed a mixed result w the Ibrance. Although I say Ibrance didn’t work for me, another oncologist said “it probably worked 2 months then stopped”. I guess because some spots cleared and I had new ones.

[Ange0901 in reply to Snowcone16]

Thanks for that snowcone. I think all of the meds combined give different aches and pains every week, but as you know at the back of our minds we’re always wondering if they’re new mets. X

[Barbteeth in reply to Ange0901]

I’ve had a scan at 3 months..some sclerosis seen

Barb xx

[blms in reply to Ange0901]

I also do scans every six months

[Sister3nkc in reply to Ange0901]

My scans are quarterly. For 4 years now.

[Hidden]

I’m going to be the contrarian. When I was diagnosed with mbc, I did a course of IV chemo. I lost my hair, I had to boost my white blood cells with neupogen, a shot I gave myself. The chemo knocked most of the cancer out of my lungs. I would do it again. I have very mild neuropathy that I mostly don’t notice. My goal is to live a quality life as long as possible. I don’t think I’d be in as good a shape without it.

[Sister3nkc in reply to Hidden]

I had IV Chemo in 2000.

Adriamycin/Cytoxin. The big guns.

Yes it was rough. It changed me forever. I had young children still at home. It drastically changed everything, our current financial situation, our long term plans for retirement, I LOST MY VIGOR. MY STRENGTH.

I ALSO WOULD DO IT AGAIN.

I AM ALIVE. I REJOICE IN THAT.

There may be more effective treatment options now, I am on Ibrance and Letrozole. It's working, 4 years on it now.

I have had great doctors, some not. But truly, the doctors and NOT the enemy.

Be grateful.

I have met many people along the way that are not here anymore...😥

[Formersnowbird in reply to Sister3nkc]

I had your exact same chemo treatment, also in 2000. Was fine for 18 years. I started on Ibrance and Letrozole in Feb. 2018.

[Snowcone16]

Hello! How long with MBC? I have not had chemo either. I’m open to it. My initial diagnosis was stage 2 in April 2016. My tests showed I had a 15% chance of recurrence. It was lowered to 13% if I did chemo so I opted out. January 2018, I had in bones. March on my scalp. In August, scans showed Ibrance didn’t work. 10+ small spots on liver. Now on Afinitor and Exastamene. Have shifted to largely organic, reduced sugars. I was juicing but have no shifted to keto. You have to follow your gut. As you know there are many that chemo has worked and equally as many that it failed. God bless.

[Hidden in reply to Snowcone16]

Hi Snowcone

I was diagnosed in July 2014 mbc w lung Mets. I had about 13 rounds of Abraxane. It wasn’t bad except for hair loss, having to poop within 1 1/2 to 2 hours after and very mild neuropathy which for the most part isn’t noticeable. Also had my breast tumor removed.

[JoyBe]

I say go for it. I'm not supportive of drugs either.

I can't take pain medication due to horrific side effects.

I don't do flu shots. The only history I have is taking my ADD medicine.

I don't have pain and if I do I take Alive.

I pace myself slowly with everything I do.

Slow and steady wins the race LOL

I take Propolis and it has prevented my WBC from dropping.

I have had very few side effects if any from Ibrance and Letrozole.

However, my MBC is in my bones and was discovered in March 2018 from a fracture to my arm.

When I started the Ibrance and Letrozole on April 1st, the fracture started healing very quickly.

My tumor marker first went from 86 to 97 then it started to steady drop to presently 38.60, which is 7.3 points away from the normal range of 31.3 - 0.

I honestly feel my healthy diet and my history of limited pharmaceuticals in my system supports my ability to benefit from the Ibrance.

I'm a young 60, great BP 120/83, over weight, did put on close to 20 lbs. after starting the Ibrance... I do love to eat salmon, grass fed meat, fresh fruit, vegetables, organic grains,cheese,yogurt and milk are a must to prevent side effects. I cook everything in a cast iron frying pan.

I take Propolis, a multi vitamin, Vitamin D w/CalciumCitrate and 2 turmeric caps daily along w/ my ADD med. My key to Ibrance and letrozole is taking both after I eat dinner around the same time every night.

Hope all this feedback helps. 25 year survivor, I'm inspired !!! You go girl !

[Merzy in reply to JoyBe]

-Do you mind sharing what kind of ADD med(s) you take? I’m on a bunch of meds for “mental struggles”, too and HATE it.

-Before being diagnosed with BC at 37, I was already being treated for ADD (and Chronic Disorganization), anxiety/depression, OCD spectrum disorders, and BFRBs. I can’t remember all the drugs I’ve tried in the past for the ADD, but I remember I HAD taken Ritalin for a while and last had taken Adderall...which I stopped because it exacerbated my BFRBs.

-My “shrink” is about to prescribe Vivance (?) for me which I hope will work. I know everyone’s body chemistry is different, but since you keep to minimal medicine, chances are that you can tell whether your ADD meds work. I’m on so much crap, I can’t tell what works anymore and what doesn’t...or where my fatigue and nausea are stemming from.

-(Please excuse my wordiness! This is my first time asking a question and I have SUCH difficulties self-editing !)

-THANK YOU for what you’ve shared already and for reading this through.

-Best wishes to you!

[SeattleMom]

Bless you, Hop! You are in all of our prayers; hope you find the protocol that keeps your cancer sleeping for another 25 years!! HOORAY FOR YOU!!

Linda in Seattle XXOO

[lovetopaint]

I was diagnosed de novo in May of 2018 with one brain tumor and one breast tumor. Surgery removed the 1.5 cm brain tumor--it was on the outside. Follow-up stereotactic radiosurgery to the tumor bed site in case any cells were left. They left my 2 cm breast tumor in and I have been on anastrozole for 5 months and Ibrance for 2 months/cycles. The recent PET/CT scan shows no breast tumor! So--the combo can work--and quite well. Of course I pray it keeps on working. Because of Ibrance side effects (mostly infections) my onc did suggest I reduce the Ibrance dose to 2 weeks on and 2 off. Not sure if that is a good idea--we will see. I am 72 and have been healthy up till now. I do suggest drink a lot of water, eat well, and exercise. Best to all of you! I live in Mpls, MN, USA.

[blms]

I think so. I only had Mets in pleural fluid and lining of one lung and very little fluid. The oncologist was surprised i found it. So first scans were in December, next in June which were clear and decision to wait until December again. But last December was so depressing for my children, husband and me. My children cried Christmas Eve and I see no reason to put them through that stress this holiday season. A few weeks should not make a difference in treatment choices. I’m thinking January

[Felish48 in reply to blms]

Have you ever had to have the fluid from your lung drained or did the fluid dry up on its on? I hope that you're doing better?

[blms in reply to Felish48]

I had fluid drained from the pleural space under my left lung, not my lung directly. My lung did colapse but only for about 30 mins then all was fine. It was just the thoroscentesis but the rest cleared up on its own, with help of immune boosters.

[Felish48 in reply to blms]

Are you doing much better since they drained the fluid? Is there a prevention for that? I hope the cancer meds help ...

[blms in reply to Felish48]

The fluid is caused by the spread of MBC, or other cancers with othter people. So, I don't know the answer to that. I did feel better without the fluid. Is yours in your lung or under your lung?

[Felish48 in reply to blms]

I had plural on the right and left , jusr like yours the lining. Its scary because ut comes without a warning.

[blms in reply to Felish48]

Was MBC diagnosed from your fluid or did It come later

[Felish48 in reply to blms]

It came later, they tested the fluid and said that they found cancer cells in the fluid.

[blms in reply to Felish48]

Ok same as me

[blms in reply to Felish48]

Where do you live?

[Felish48 in reply to blms]

Which immune boosters are you taking?

[blms in reply to Felish48]

Oh lord, many. i see a Chinese doctor and she gives me a liquid I drink twice daily and some pills, plus I drink tumeric tea with ginger and cinnamin, vit c and d and others

[Felish48 in reply to blms]

We have a lot in common, I too drink the turmeric tea, as welk as ginger and cinnamon. I alson drink warm lemon water in the morning.

[Felish48 in reply to Felish48]

Have you ever heard of ip 6 ? Look it up, it really helps.

[kduck in reply to Felish48]

How are you?

[lynnhbtb]

Ibrance failed for me and I had breakthrough mets. I'm now on some chemo and getting help dealing with side effects. Chemotherapy isn't a picnic, but it's what I'm doing now. Good luck to you.

[blms]

Yes, it was not good and I refuse to put everyone, including myself, through that this Christmas. I will not let any doctor control my life. My disease is my life. I respect my doctor and his knowledge but I also am very informed and more importantly, only I know my own body. I have no idea, realistically, whether my cancer cells have spread to some other part of my body today. But, I feel healthy, and I do not believe it has. If it has, three weeks is not going to make a difference. The stress I will go through at Christmas with this, WILL have a negative toll on my cancer. Sooo, here I am.

I did all the bilateral/tram, chemo, radiation, 10 years of hormonal pills, etc 21 years ago. This go around, I'm doing things a bit differently.

[Julie2233]

I’m on 8th cycle ibrance, faslodex and denosumab for widespread bone mets. Prior to diagnosis I was in a lot of pain. Couldn’t get dressed without using a ruler because of the pain. A dose of radiation for spine mets and then onto the regime. A little reoccurrence of pain with the change in weather but 2 scans have now shown no spread, no increase in volume and areas of bone healing. My only real side effects is fatigue which is manageable. I hate taking medication but this regime has given me my life back. If it works for you don’t fight it.

[Bailey3266]

Hi:

Stage 1 in 2010-double mastectomy & failed to tolerate Tamoxifen (as I was going through menopause); but low oncotype score so took a chance. Diagnosed with Mets to Lymph and Lungs 11/2017. Currently on my 16th cycle Ibrance/letraziole; ct Scans every 3 mos. All have shown much improvement & now NED or I call it a remission (even tho it is still there; but unchanged in 9 mos so it helps others to understand and stop asking “how are you doing” with sympathy eyes (I know it’s well meaning; but it reminds me I have Mets and I’d rather forget while I can) I take the meds tolerate the side effects as well as any. I drink lotsa water and exercise daily (thanks to my dig). I do get severe SCANxiety but it passes once 48 hours pass & I get my results! I mention that because I’ve read others have to wait a week & I feel terrible about that; I wish it was MANDATORY that results are given in timely manner! I’ll spare you further details except I’ve had ups & downs; but all tolerable and at times I am able to force myself to forget (we’ll not really; I just don’t dwell on it & try to be as optimistic as possible). I hope sharing may be inspiring to others who are at beginning of Ibrance (similar; I think there are 3 approved now) therapy.

I do feel terrible when I hear this is not available to all; I think there ARE ways to get waivers on $$; I think that’s due to good “PR” for the drug company!

Question: I’m always waiting for shoe to drop (even though I push this recurrent thought away). Can others that are on these drugs and we’re on this combo please share how long it has worked and what next step is for us. I keep seeing many who have METS for many years; but I thought IBRANCE only extends life average 24 months; INC says she has slew of meds to “try” when it stops working. Very scary; not knowing. I have 2 teens and even though I do try to remain in denial (mainly to shove the fears away if just for an hour, day, or week) and also be optimistic I do feel “Eyore-like” (heavily pessimistic” especially when thinking ahead to the things I may miss if I’m not here 3 mos, 6 mos or year or even 5 years from now (like my children’s graduations and marriages and grand-babies, etc)!

I try to travel a lot and looking forward to small/big trips definitely gets my mind of dreadedness if this diagnosis.

I know this therapy will fail but do not know when or what will happen then. I’ve watched 3 of my immediate/extended family & friends go thru hospice for other cancers & it’s very very scary to think of—so I push it away and think of Scarlett O’Hara I’m Gone With The Wind: “I’ll think about it tomorrow”. Can others help and/or share with stories further along with similar diagnosis: METS to Lymph & Lungs?

[Sister3nkc]

Keep your chin up.

Before breast cancer I rarely even took tylenol. I was vigorously healthy. I think that's what I grieve for the most, loss of vigorous health. Now I am on several maintenance medications that seem like a lot to me but not what I've seen others have to take.

Having said that, cancer medication is ESSENTIAL to survive! I've been on ibrance/letrozole for 4 years now with no progression of disease. I don't like taking it either but it is keeping me alive! I do understand what you mean about IV Chemo. I had it 19 years ago as a stage 1 patient, it was rough! Not sure I'd go that route again, it may have delayed progression but the cancer came back as stage 4 next time.

If the ibrance is working for you maybe you can give it a little more time? It's keeping many patients alive with a much better quality of life than IV chemo.....

25 year survivor is something to really celebrate!!!

Namaste

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