10 years of MBC- tumor markers creeping up.

[Dawn53094]

Hi everyone. I was diagnosed Sept 22, 2011. Bones only. My first 4-5 years were pretty harsh. Avastin, Femara, Pamamidrate. After nearly dying, my oncologist just left me on Femara. Now my markers have been slowly increasing, the biggest this last test, every 4 months. They jumped 20 points. Now at 102. He has said my next line of treatment would be Faslodex and Ibrance. I found out yesterday and I'm not handling this well. Many reasons, ive been spoiled the last 4-5 years, just a daily pill, appts only 3 times a year. Scans once in years. Now I know my life will go back to the insanity of constant appts, new side effects. I also wonder, will I now just end up blowing through treatment after treatment? Im scared of Faslodex as I hear its painful. Ibrance can be rough on blood counts. Any tips would be appreciated.

[debbiedo2063]

Hi thereI’ve been on Ibrance 125 and Faslodex since Dec 2020. No side effects maybe a bit fatigue now and again. No pain from Faslodex injections monthly and bloods fine. Mets to bones, pleura and nodes. Scans stable.

I’ve been travelling all over Uk last few months. I found letrozole much worse tbh.

Good luck with treatments.

Debra xxx

[Dawn53094 in reply to debbiedo2063]

Thank you! I'm glad y our doing well. Curious why u felt Letrazole worse.

[debbiedo2063 in reply to Dawn53094]

I was on letrozole from 2018 after a mastectomy , tamoxifen from 2012 but through menopause after recurrence in 2018. Letrozole made my bones ache so much my mobility was awful and I developed bone mets. Since going on Faslodex I’ve been so much better re mobility.Debra xxx

[luckysmom13]

First of all, congratulations on 10 years!Many women take Ibrance and Faslodex and do very well. I would guess that compared to your prior medications, they are much easier. Just give them a chance.

I have been on Verzenio (same category as Ibrance) and Faslodex for about 3 1/2 years. I have fatigue and some diarrhea, likely due to Verzenio. Faslodex does cause some pain, and I tend to have a lump on each side for about a month until the next shots.

Good luck to you!

Amy

[Missmaddie615]

Woohoo- 10 years, that’s awesome!

I was on Ibrance 100mg/faslodex for a year. I miss being on that combo cuz I did not have many side effects from it. Ibrance caused hair thinning, but no one was able to tell other than me, from time to time mouth sores that went away in a day or two, and I was a tad bit tired. The faslodex shots left me a bit sore at the injection sites for about a day or two, but a heating pad and walking right after the injections helped. Have the nurse warm up your shots, and have them inject the shots slowly. That makes a big difference! I was able to work and lead a pretty much normal life! Changing treatment is always scary, but give it a chance. Many ladies are on this combo for years and years! Wishing you the same success with your new treatment!

[blms]

I did not mind the faslodex shot. It is a bit thick but the nurses have a way of giving it to you and I really never minded it, at all. Did you have a scan to see where cancer is currently?

[Red1246]

Hi Dawn,I’ve been on Ibrance 100mg and Letrozole (Femara) since June 2019 when diagnosed with bone Mets.

Aside from some hair thinning and occasional mouth sores that don’t last long, I’m grateful for Ibrance and Letrozole as my scans have all shown stable.

It is true that wbcs are lowered with Ibrance but they’re never low enough to cause concern. And they bounce back after a period off Ibrance.

Most people on this site seem to do well with Ibrance and I hope you will as well. Try not to worry. 🙏🏻❤️Kathleen

[Hazelgreen]

Have you had a recent CT scan to see where the progression is?? As many on this site will indicate, most oncologists do not rely much on tumour markers, even when they are very high (individuals have mentioned markers in the 1000's). You need to know what is happening at the sites of your tumours.Warmest of wishes,

Cindy

[cpidacks]

Hi Dawn: First of all congratulations on 10 years. I was diagnosed with MBC to the liver in March of 2019. I have been on Faslodex since that time with stable scans. Don't be afraid of the Faslodex. The only side effects I sometimes have are hot flashes, bruising, itching and soreness at the injection site. Try to relax when the nurses give you the shots. Don't tense up. I walk after the shots and use my heated seats in the car. This helps. The first month of shots I was very sore, but since that time the soreness has lessened to sometimes not at all. Good luck to you and to all of us in our journey.

[Gibby21]

My diagnosis is only months old but have been on Ibrance and faslodex since beginning. 125 m of ibrance and only side effect is I’m tired, occasionally upset tummy but nothing huge. Faslodex injection can hurt a little, I get a little leg pain but nothing I can’t work through. The appointments are only once a month I’ve been able to travel working around those appointments for me at the end of the month. So don’t worry you should be fine.

[1711JPD]

Hi.

I am new here. I have been on 125 Ibrance and Faslodex for 6 months. Some fatigue but that is it for side effects. I bought a can of Medique Topical Coolant spray from Amazon (where else!) that the nurse sprays on me before giving me the injections and their is no pain. I jump a mile when sprayed because it is really cold! I massage the areas after the injections and have had no lumps. Everyone is different, but perhaps this could help you or others?

Best wishes to all!

Joyce

[mariootsi]

I find Ibrance and Faslodex to be very tolerable. I hope the same for you.Make sure the warm up the Faslodex shots and give them slowly. You will be fine! Good luck!

[Andibo]

I have been on Ibrance and Faslodex with quarterly Xgeva shots. I take my Ibrance pill every day for 3 weeks/1 week off. Monthly butt shots of faslodex. No real side effects but some hair thinning and weight gain. But, I feel good and am very thankful to be stable to this point. Was diagnosed with MBC with mets to bone only in October 2019.

[diamags]

Dawn, I've been on Faslodex and Arimedex for 8 years. I can't speak for Ibrance, but regarding Faslodex, don't worry about it. It can hurt, but not as bad as a cortisone shot! Mostly though, it doesn't hurt that much. If the nurse gives it to you at room temperature and slowly, it isn't a problem. Where I go, they offer you a spray to freeze the area before the shot, but I think that hurts more than the shot. So there you have my experience with it!

[Bettybuckets]

How lucky are you with 10 years of such easy treatments and only just now starting Ibrance and faslodex…. Which I started one year ago when I found out about my MBC…. You have tons more lines of therapy… and potentially years just on Ibrance and faslodex…. A year ago My onc told me to relax as these next few years for me will be the good years on an easy treatment regimen…I am sure you had your share of worries with MBC over the past decade but .I wish I had 10 years behind me with hardly any issues like you have had. I sm marvelling over my envy of someone with MBC…. Kind of making me smile. Every journey is unique. Wishing you continued blessings!

[Kellyonekanobe]

I’ve been taking faslodex for about a year given as two shots in the button every four weeks. It’s a bit painful and sometimes sore afterwards but not horrible. I don’t seem to have side effects otherwise.There is so much we can do for ourselves in addition to what our oncologist provide. Read Joe Tippens blog which teaches us our we can treat our cancer as a mrabolic disease which it is 98% of the time

Watch WHAT THE HEALTH on Netflix. There is nothing more important than our diet! I have become vegan and feel so much better. No meat, no dairy, no eggs and most important no sugar. Cancer feeds on sugar. There is a fabulous book with awesome information by Jane McLelland HOW TO STARVE CANCER. Good luck. Blessings 🙏🙏🙏

[Hidden in reply to Kellyonekanobe]

🙏🏼❤

[Andibo]

I'm on Ibrance 125mg and Faslodex with Xgeva quarterly. No problems here. Just some hair thinning and weight gain. Otherwise, it's not been bad at all.

[blms]

I did not mind the faslodex at all. A tiny bit uncomfortable but not painful

[cancerjustgotreal]

Dawn, I also have MBC in the bone (only) diagnosed 6 years ago & we're same basic age, 67. My 1st line of treatment was Ibrance & Exemestane which worked for 4 years until cancer spread the 1st time in 2020 to, of all places, my right tibia below my knee. Cancer started in my ribs, spine & pelvis.

Ibrance never affected my blood counts which I heard from several others during that 4 years. My side effects were nausea off & on, joint pain & pretty consistent fatigue. I could still function & continue most activities I'd been doing before my cancer came back & metastasized in the bone. I was largely happy w/ Ibrance & Letrozole & would've liked never having to change meds.

But I had to w/ Faslodex, by itself, for nearly 3 years (33 & 1/2 months) now. With no further progression, I'm happy to say. My former oncologist pressured me the entire time to add Verzenio to it which I refused bc of its nasty side effects & probable permanent damage to lungs & heart. I may or may not be taking a risk by not adding it, but I've had such a good run w/ Faslodex alone that my new onc says to hold off UNTIL I need it once cancer spreads again, bc as we know, it always will.

*** If anyone's done/doing the same — taken or taking Faslodex ALONE for metastasized cancer — I'd greatly appreciate hearing your own experience w/ it!

As for Faslodex side effects Dawn, I'm always surprised when I hear it's so painful bc the 2 shots I get monthly for nearly 3 years (on my backside just below hips) are just not that bad to me. Yes they hurt, but all shots do & considering I have no side effects AFTER THAT, I'm happy to continue getting them. However, for the 1st 3 months I did have a rash break out on my back after the injections, & then it stopped.

Dawn, I understand you've been very fortunate taking Femara all this time w/ very few disruptions to your life. I wish it could continue for you. I think the 1st time cancer spreads is particularly alarming, but the fact is that's what metastatic cancer does. Never in my life have I had to concentrate this hard on living in the moment & focusing on the here & now. My mind naturally wants to race ahead to what could be next & how it might further diminish me. But I can't do that! And neither can you. Take it step by step, you have other options if it gets to be too much, aka lowering the dosages.

We are changed women & men once we have an incurable disease. But changed in good ways too when we can now appreciate the little things, maybe never before considered. When we can look at the world w/ fresh eyes, resilient & hopeful REFUSING to give up. When we rediscover the value of others who love us & bring comfort. I became so much more hopeful once I stopped to appreciate, in detail, the life I was given. There's a refrain from an old Celtic hymn I've been saying for 13 years since my original breast cancer started, when I don't think I can last a minute longer or take another step in pain. "One step enough for me" said over & over. It refocuses my thoughts on what I really want which is to — Keep going. I hope you can find this too Dawn & that it might not be as bad as you fear.

[Sister3nkc]

Hi Dawn, I was on Ibrance/Letrozole for 6½ years. There were side effects, all tolerable except the fatigue, some bone pain(Letrozole?) although I was still able to do many things and enjoyed a decent quality of life. My WBC/ANC counts would drop, so I took infection precautions and remained on the treatment. Then a new lesion appeared on my L1 vertebrae and treatment was switched to Faslodex alone. Yes, those shots hurt! Again, my worse side effect with the Faslodex is fatigue, some joint/bone pain. I sleep more. 4 months ago doctor added Kisqali, now I'm even more tired if you can imagine. I Understand why you don't look forward to more appointments and tests. Sometimes I get so very tired of that but I push forward and reluctantly realize it's just gotta be this way. 23 years since my Stage 1 diagnosis and 8 years after Stage 4 diagnosis, I'm still here! So I suppose, in a sense, all this fuss is after all, keeping us alive.

Give the new treatment a chance, see what happens. Sometime the side effects start to level off after a few months on the drug. Some lucky people have little side effects at all. If it proves effective and you are stable you will probably not have to go in frequently, maybe back to quarterly visits. Chin up, go forward, it may not be much different than what you were already doing.

[kokopelli2017]

hi Dawn. change is difficult. especially when you were happy with your previous treatment. so I empathize with you.

I am at 5 years. I too was on letrozole (femara) only for almost the entire time. I recently switched to faslodex only. I adjusted well to the faslodex....I do not find the 'shots' painful nor have I had any lumps or bumps. (I opted out of ibrance....personal choice.)

hoping you tolerate the faslodex as well as I have found it.

my biggest complaint is fatigue. but I also had that with the femara.

good luck to you in adjusting to your new treatment.

best wishes....

carole💛

[Buffwright]

I remember ibrance fondly. It was my first line and I was on it for 3.5 years. During that time I traveled to Brazil, India and Europe. My hair thinned a bit and I didn’t feel great, but it was doable. I don’t remember any pain with Faslodex. Good luck!