METs and Ibrance: I'm new here...4... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
2,645 members2,205 posts

METs and Ibrance

I'm new here...48 years old with breast cancer METs to my lungs. Originally diagnosed with Stage 3b in early 2016 and initially I didn't know it was metastatic as the nodules on my lungs were too small to biopsy until late last fall when one grew just barely large enough. Because of the uncertainty I chose not to do chemo and instead focused on doing things to get healthy and strong and spend lots of quality time with my family. Also had trouble with most of the hormone therapies (Tamoxifen, Letrozole) causing hand and joint aches besides the typical hot flashes and fatigue. But then after the lung biopsy and METs diagnosis I decided to give the Ibrance and Faslodex a chance. Started the 125 mg but took a month off because of the drop of my neutrophils and white blood cells. Also immediately experienced stomach upset (cramps, aches, diarrhea, nausea) and fatigue so we reduced dosage to 100 mg on the second round but still struggling with stomach issues and heavy fatigue. I understand many have had good success with minimal side effects so am trying to tough it out. But finding it a difficult balance between choosing a quality life where I'm feeling good versus meds that may help extend my time but negatively affect my daily life. And these are the better meds I know...so really shouldn't complain...can't imagine what the conventional chemo would have done to me. I guess I've been happy to focus on feeling strong and healthy these past few years and have really enjoyed them, that it's hard to accept something less. Feeling torn.

41 Replies
oldestnewest

Hi Charlie

I didn’t want to take the hormone pills either and if chemo had been suggested..forget it!!

However I’m 10 months or so taking Ibrance and letrazole and managing the 100mg Ibrance although I do have tummy issues so take a probiotic

Why on earth any of us are subjected to the high dose Ibrance I don’t understand as apparently the lower dose works the same

My night sweats were hideous but now having acupuncture and it works!!!!.. they’ve gone

You’ll find that the side effects settle after a while and there’s still the lower dose of 75 mg to fall back on...in fact I’m going to ask my oncologist about reducing mine...anaemia is my problem and have had iron infusions fo that

Keep in touch with us ladies on here...they’ve been my source of kindness and support...we also have a few laughs as well!!!!

Barb xx

5 likes
Reply

Thanks for the support and sharing your experience with me, Barb. Those night sweats are no fun at all. I tried acupuncture a couple of times but may need to give it a go again. And I’m going to try to reduce my Ibrance dose to 75mg too and see what happens. Thank you!

1 like
Reply

I am 65 and almost 5 years w lung Mets. I did have chemo and it cleared a lot of the Mets up. I credit Abraxane for contributing to my relative stability with this damn disease but each of us is different and we have to make the best choices for us. I have been on letrozole and Ibrance, now faslodex and Ibrance 125. I’m overweight and seem to tolerate the dose in terms of my labs. I also fight the fatigue. It was really bad right before my recent week off. Letrozole caused joint discomfort. I feel much better on faslodex. I try to eat healthier and try to juice greens daily tho lately my stomach has been off and I couldn’t do it. IMHO, this disease requires meds to keep it under control. They all have some side effects and you’ll adjust to them as best you can. I am also a strong proponent of diet as medicine and reducing stress. I use meditation. For inspiration and lots of great wellness info, please visit Kris Carr’s website. She also has a stage 4 cancer for which there is no treatment. Very uplifting. Cancer made me stop and really think about myself and what is truly important in life. It sharpens your focus. I don’t see it as a gift, God knows this is the worst struggle I’ve ever been through. But it is an opportunity to reassess and become more proactive about taking care of yourself and pursuing what gives you joy and peace. Glad u found this site. It is an amazing site with kind, heroic women who are walking your walk.

11 likes
Reply

Beautifully said!

2 likes
Reply

Very comforting to hear you are 5 years in and managing it okay. Hearing others deal with similar symptoms helps me feel like it’s not all in my head. Seems like I struggle with any med I take so wondered if it’s just me. I too have looked to improving my diet (taking my green and red supplements every day) and overall health and happy to say these past couple of years I’ve totally improved my constant digestion problems and am finally sleeping. I totally see the cancer as a wake up call as was working too hard, had a lot of stress, worrying all the time and not sleeping (though I didn’t even realize it as needed to work for us financially so it’s just what you do). So it has been a blessing for the time I’ve been able to spend with my family now. Started riding again which is great therapy. I just have to find a way for these meds not to interrupt my life now as taking away my energy. And wondering if that’s affecting my anxiety levels right now too as fatigue brings you down. Glad I finally reached out too! I’ll check out her website for more wellness tips. I did see an interview with her on Chris Wark’s site. Also following TTAC. So much information out there which is great but still a challenge to decide what’s right for me. Thank you! 🤗

1 like
Reply

Hey Charlie

Just saw that you ride...fantastic!!

I’m a very keen rider and struggle with pain..in fact I fractured a vertebrae when I was riding my horse...hence an X-ray and discovery of my mbc in bones...so in some ways it sort of did me a favour or maybe the diagnosis would have been delayed

I’m having to settle for steadier riding for now..no jumping fences..annoying but I can at least have horse therapy regularly

Barb xx

1 like
Reply

Wow that is kind of karma to discover your mbc through riding. Fracturing a vertebrae must have been very painful though. I do think horses can be an amazing therapy. My young adult children, ages 18 and 20, rodeo and I love following them around to college rodeos. They do the timed events like tie down roping, breakaway roping, team roping, barrel racing and pole bending. We also ranch and raise purebred cattle.

I have a special 4-yr-old mare that my husband and kids surprised me with on my 48th birthday last November. We are usually buying horses for our kids but this time they bought one just for me and she's so much fun! It all keeps us very busy plus I'm still working (which I'd rather not be but decided it's best to keep the benefits).

I sometimes think that my horses are all the therapy I need. But haven't been on Ibrance/Faslodex that long and am encouraged by all the positive results and success, so figure I need to give it an honest try. If the fatigue, joint pain and stomach issues keep me from riding well then it might not be for me. We shall see how the next few months go...as riding might be all the therapy I need.

Reply

Hi Charlie

I’m in UKand fascinated by your horse world which is so different to what we do here

My daughters both ride but now one lives in London so rides when she comes home....she was a keen show jumper when she was younger

I used to hunt and compete in dressage until my diagnosis...I would love to do s dressage test again but not strong enough yet and my horse is out of training ..st least I manage rides out and thinking of taking them somewhere different for a ride..I need to be able to drive the horsebox without pain though

When I first started my hormone treatment I thought I’d never ride again..however I’m getting gradually stronger..yoga does that...and if I manage the pain...I have to take opiates...I can manage steady rides...also there’s the social side as well..I keep my horses at a livery yard and have a great bunch of friends up there

The whole experience is therapeutic..once you settle with your meds..get some good pain meds and get on your lovely mare!!!! Make it your goal

All the best

Barb xx

1 like
Reply

Thanks Barb! I will for sure!! Indeed we come from different worlds as we’re from Canada. But it doesn’t really matter what you do in terms of equine activities, I think the horse therapy is all the same. And enjoying it with your family and friends is even better. So hats off to you for getting back riding again!!👍

1 like
Reply

Hi Charlie.....I'm from Canada too, Alberta for me how about yourself?

Sandra

1 like
Reply

Me too. Alberta Canada born and raised here. We’re on a ranch in east-central Alberta raising purebred black angus cattle. My kids, 18 and 20, college and do a little amateur rodeo too.

Reply

Cool. I think you are the first person from Alberta that I seen on this board. I live close to Calgary....I was reading that you take Faslodex. In Calgary that isn't covered in the health plan I have. Do you pay out of pocket? I'm still on Ibrance/ Letrozole.

Sandra

Reply

That’s a bummer your plan doesn’t cover it. My Great West Life benefits with work are covering 90% and then grant money covers the other 10%. But I was told if my work benefits didn’t cover it there was a good chance I could get it covered through government assistance or other programs. Your doctor mention any alternatives? Note I didn’t tolerate Letrozole at all (lots of joint pain) which is only reason they let me go on Faslodex. The Letrozole/Ibrance is more standard here I guess.

Reply

I think all of us have had problems with Ibrance/ Faslodex. We have all sought relief from the side effects.

So glad you found this site. It is used by wonderful warriors who will offer advice, encouragement and just let us vent.

I would say that the side effects seem to lessen in time and we adapt.

My stomach issues were the worst side effect for me but I take my Ibrance at night with my meal and before I take it I chew a lactaid quick dissolve disc. My onc said that there is lactose in Ibrance and the lactaid has helped.

The fatigue is terrible but if you can take walks it helps!

Also, there is a lower dose that is reported to be as efficient as the higher doses.

Speak with your onc. He or she can help you come up with a plan. Believe it is worth struggling with side effects to keep us going!

You are so young and you are strong! Stay positive as much as you can!

Many women here are stable or ned because of these meds! Keep going and post your questions and feelings here as it all helps.

I know for me I couldn't have come this far without this site!

I wish you well! You've got this!

Love,

Marianne

3 likes
Reply

Thanks for the kind words and words of encouragement!! You’re right and didn’t realize how much I needed to hear that from those who are going through it. Thank you!🤗

Reply

Welcome, I am fairly new here too. This is a wonderful site with the most beautiful and amazing ladies. I am on Ibrance 100 mg (recently dropped from 125mg) also I take Faslodex injections monthly. Been on the regime for a year now and my 3 tumors in left lung which have been stabilized for a couple of months. Just passed my 4th-year mark since original diagnosis. My main complaint is the fatigue, I recently retired so I just lay down for a bit and then move on with the day. I will have PET scan in June to follow up with the CT scan I had this month.

Hang in there you will figure out how to adjust and if you have questions or concerns just post here. Everyone is so helpful and caring.

Best wishes to you!

Robin

1 like
Reply

Thanks Robin! Everyone has been so great already. Only wish I would have found this site earlier. Fatigue seems fairly common so it’s not all in my head so getting more rest is just part of the deal. And glad to hear you’re stable now. Wishing you all the best in your scans too!

Reply

Welcome Charlie. I'm 55 and I know it certainly is a shock isn't it and boy it truly sucks. Up to the point of my diagnosis I have been healthy as a horse so to speak. I started on Ibrance/ Letrozole last May and have had some joint issues (although they seem to have lessened over the last few months) and fatigue which mostly is day 18-21 of cycle. Honestly I listen to my body and rest when I need to. It is definitely hard to give up your old 'do anything you want when you want' life but as you adjust you will slowly add the things you love back into your life. This is a wonderfully supportive group of ladies that truly get what you are feeling. I look forward to getting to know you better. Take care.

Sandra

1 like
Reply

Thank you! Look forward to getting to know you all better as well.

1 like
Reply

Hello! I’m 55 and was only diagnosed late 2017, with bone mets from the get go . It too was quite a shock as I would have expected to have been in the lower risk groups( no family history, never smoked, vegetarian , active etc) , yet here I am . It was particularly worrying when my lymph nodes on my affected breast cancer side came back 16 out of 18 positive . Thankfully Ibrance had just been approved here in the U.K. at that time (which is free on NHS )and I didn’t have chemo or radiotherapy , but went straight onto Ibrance/ Letrozole . Initially the first few months were harder, but with rest , hydration and by keeping moving, I got through the early stages . I am now on my 17th cycle and stable with no evidence of active disease from my recent scans . Hang in there as it does get easier ... keep busy and keep moving ... and the ladies on here can help with advice and just someone who understands ... x

2 likes
Reply

Wow, that’s great to hear. First you’re on your 17th cycle and keeping it at bay. Second that your body adjusts and it gets easier. All very encouraging. Thank you!

2 likes
Reply

I was also 48 when first diagnosed with stge 3b breast cancer. I had a bilateral mastectomy with a tram flap,both A/C and Taxol IV chemo, 5 years of tamoxifin 5 years of Femera (letrozole). Then off for 10 years, FREE, then MBC to lungs. I am over 20 years since original diagnosis, so that is something to say. I also had, and have, a Chinese doctor who gave me acupuncture helping with those chemo symptoms quite a bit. Plus I was, and still am, on a regime of suppliments to help assist my gone bad immune system. After this current diagnosis in the fall of 2017, I changed my diet, went back to my herbs ( which I had stopped to save money) and began some energy work into my daily routine. Not exactly sure (not discounting prayer!), what is helping but I am currenly NED and have been since last July. Right now I am in a ridulous amount of saddess and stress as my best friend of 50 years, whom I have been her medical directive, etc. just suddenly died the other day. I am still in process of planing and executing her funeral as she has no other family. It is all very painful and I am concerned about my immune response to stress as I know that is cruical. So, her I am not sleeping and need to get my shit together quickly. My children were 2, 5, 8 an 18 when this began and they keep me busy and positive because I had no choice to be so focused on me. Now my youngest is 23 and i am so grateful for that and all those years to raise them. But, they still need me, we are all very close. So, I attempt daily to keep positive thoughts, try to laugh at anything each day ( not always so easy) and deal with these meds which are brutal at times, and very scary. The lower dosage made a big difference and I am still volleying for the 75 mgs. Keep up the fight. I think we need another positive word instead of fight. My oldest son, 29 is getting married next Saturday and I need to get positive again quickly from this current trauma.

Reply

Sending hugs . You are always here for us and I hope you get the love and support you deserve too x

Reply

You are kind to say so. I Could not sleep last night at all--gotta stop! Seriously, my pleasure to add and help in any way. It does me as much good as I hope it does someone else. We are sisters, truly.

2 likes
Reply

So sorry to hear about the passing of your friend. I hope you find comfort in those around you and all the memories from those 50 years together. Stay strong.

Reply

Oh, I am so very sorry about your friend's death! Having this blasted cancer sure makes us vulnerable emotionally as well as physically. Do take care of yourself in the days and weeks to come!

Reply

My sincere condolences on the lost of your friend. I love reading your posts and always find something that tweaks my interest in each one. Your longevity with this disease inspires me to no end. Good luck with your son's wedding. Try and get as much rest as you can. Take care.

Sandra

1 like
Reply

That makes my day that I can help you wonderful ladies in ANY way!1 Thanks! I really need to sleep!! I am batty right now working on about 2 hours last night. enough of this!!

2 likes
Reply

Hi Blms,

I'm just catching up with posts. I am so sorry to hear about your friend's death. Please take time out for yourself to rest and ask for help with the funeral arrangements if needed. I know how overwhelming it is to arrange a funeral.

Sophie ❤

Reply

I'm in the same boat. Verzenio almost killed me and even after 6 weeks of being off it, still suffering from the GI issues. So next, we went with 125 mg. Ibrance. Around day 10 it hits hard and my WBC went down to borderline. So next round, we went with 100 mg. WBC came back up, but day 10 sent me to the ER with heart attack symptoms. Side effect of the meds per the doctor. Now trying to get over the flu (first time in years I've caught it) and going for scans Monday to see if my 1st 3 months of medication made a difference. Tired of feeling exhausted, night sweats are horrible, ribs hurt, RA is worse with with the meds. Quality of life means more to me than quantity! I'll decide what to do after we get the scan results on Wednesday. My husband is behind me, but terrified I'll quit all meds and die! I'm eating all the cancer killing foods, eating right, doing all I can to fight. Just one day at a time.

Reply

I’m with you. Quality and being able to partake in daily life activity with my family is my wish. Helping our own bodies fight with eating right and feeling strong makes more sense to me. I’m going to focus on one day at a time too.

Wishing you all the best with your scans and hoping you’re feeling better soon! Let us know how it goes.

1 like
Reply

HIndsight is 20/20. At the end of the day you have to do what's best for you. You are your own advocate & while cancer kind of has a hold on that, YOU know You.

I thought I did all that I could do to prevent a recurrence, but alas I did not...BUT I don't regret ANY of my decisions.

I'll live & deal with the side effects of the medicines as long as I am doing better than worse.

Hang in there.

2 likes
Reply

Thank you!! I love that you say You Know You!! Gives me that faith in myself again. It was a very difficult to say no to chemo initially (as one usually just does what the doctor says). Also not easy to convince my family but thankfully they trusted me (I just said not now). I also had a wonderful lady give me a book which helped give me the strength to follow my own path and trust my gut. Am beyond thankful for that and no regrets. Realized if my mind and spirit weren’t on board then it wouldn’t help me. And no matter what happens I’ll have had these special years with my family. I’m with you and shall hang in as long as I feel it’s right for me!

Reply

I'm so sorry that you have this lousy cancer, but you have come to a good place for info and support. Now, let me tell you that I just had my 15 year anniversary of living with mbc last month! I've had bone mets since first bc diagnosis and am very fortunate to not have had symptoms. I was diagnosed long before meds like Ibrance were available and I got almost five years from Letrozole and over 9 years with Faslodex, though I did take Ibrance for 10 cycles during the 7th year of Faslodex. Ibrance damaged my lungs, apparently permanently and now I have to use two different Rx inhalers and see the pulmonologist every six months. You could ask your onc if you could try stopping the Ibrance for a few months and once you can get any side effects of the hormonal you are taking (I don't remember which one it was) you could try adding in Ibrance again at the lowest dose possible. I have had very good results with Effexor for hot flashes and Celebrex for joint pain. Sometimes I joke that I am on more meds for side effects than for cancer! I also want to tell you that my face to face friend who lived the longest with lung mets lived 13 years and might have lived longer but about a year before she died her 31 year old daughter died suddenly and without warning from a brain aneurysm and she was totally devastated! We had the same onc and her onc agreed with me that she lost her "sparkle" after her daughter's death and really seemed to give up. Her whole family was devastated. Ask your onc if there is a pulmonary rehab program near by. I attended one for several weeks just over a year ago and it was both helpful and enjoyable. It was a very happy place and everybody was friendly and it did help my breathing. I also lost about 15 pounds without even trying and that was a big plus for me, lol. Good luck--I hope you will do really well for a long long time.

2 likes
Reply

Wow that’s awesome...15 year survivor! Stories like yours and your friend help me ignore the dire 5-yr survival rate. So sad about her daughter though...that would kill me too.

It’s a little scary to hear the Ibrance has permanently damaged your lungs though. That’s a new serious side effect I wasn’t aware of. I’ll certainly be asking my oncologist more about that. Am sure he’ll be reducing the dose for me right away as he’s very supportive. I might ask about the Effexor too as tired of these hot flashes waking me up. It certainly is sad that we take all this stuff just because of side effects of other drugs.☹️

And good for you for dropping 15lbs as feeling good is key...you must be doing something right.

Reply

Hello, Charlie! I was diagnosed in November 2017 with mets to spine and one pelvis. I had extreme lethargy in the early months and eventually had my Ibrance reduced to 100mg (taken with letrozole.) I found the early months to be the worst and eventually the side effect of fatigue seemed to lessen. It's usually that "third week" on Ibrance that I get a little more tired. I hope you are able to adjust! You are in my prayers! Linda XXOO

1 like
Reply

Thanks for the prayers Linda! Good to hear and am sure my body will start to adjust more to the meds soon too. Good luck to you as well!

Reply

Hi Charlie,

Sorry your here but it’s the best place to be with this disease. So much support, care and love. I was just recently dx again after 7 years. It takes time to adjust so pour out your fears, hopes and questions. We’re here for each other!

Robin xo

1 like
Reply

The support from just one day has been amazing! So thankful for everyone’s encouragement and sharing their experiences.

Am so sorry for your recent recurrence though. Hope and pray you kick it again!

Reply

I am 50 with stage 4 bc in my lungs and spine. I have shrunk an inch and a half in 3 years.

I have found pretty much every med to be intolerable as far as quality of life goes. I am trying the herbal and diet route at the moment, which I am not recommending, but I needed a break. After August, if my numbers continue to rise, I will start Ibrance. Sigh.

I definitely feel like if my life is going to be extended, I would like a better quality than the meds seem to allow. It is frustrating.

Reply

Taking a break is a good idea. Had to do that myself just to get back to feeling like myself again. And agree it is totally frustrating and seems counterproductive. I hope the herbal supplements and diet serve you well and your numbers stay good.

Reply

You may also like...