Hi newbie here

[Dawn53094]

Hi, I’m Dawn from Wisconsin. In 2011 I was diagnosed at 53, with Mets to the bone. No prior history. I was given 6-12 months. I started on Avastin, Femara. About 2-3 years in I nearly died, and my doctor took me off Avastin. I remained on Femara. That’s held me stable until current. My markers are on the increase after nearly 9 years. I’m now 62. I will be starting Faslodex/Ibrance soon. I haven’t had scans in over 5 years, so I’ll be scanned on Monday. Femara has been ok for me other then affecting my ability to walk. I cannot straighten my legs. My doctor feels it’s a separate issue but it started when I got sick and started Femara. I tire easily but still have managed a good quality of life. I have a very supportive family, 5 wonderful adult kids, a husband that is a good caretaker, but has also caused great harm financially. Long story, married 40 years. He’s not to be trusted financial wise. My kids have set me up with affordable place to live, helped me rebuild my credit after his last fiasco. I cannot live alone, so sadly, I need his help. I just got smarter at protecting my finances. Anyhow, I’m very mixed emotionally after 9 years on 1 drug and finally having to switch. My oncologist still remains optimistic but after 9 years of living with this and learning what I’ve learned, we all know how this ends. There is no cure, eventually we die. I do have a strong faith in God. I’m blessed to have had this 9 years. Any tips on Faslodex injections? Ibrance dose?

[Hidden]

Hi Dawn,

I commented on your picture and then I spotted this post. I should have started here first.

It is encouraging to learn that you have been living with this disease for 9 years and that it has been successfully managed so far. I hope that you continue to do well with your treatment. I can’t comment on faslodex or ibrance, as I’m not on either of this drugs. I’m on letrozole, zoladex and zometa.

I would be sharing your oncologist’s optimism and looking ahead with confidence. I wish you all the best.

Sophie 🌹

[Shelly1009]

It's eyeopening to hear all the ranges of what we've been promised as far as time. My first onco told me 3-5 years max. And now I'm seeing people on this board that have far surpassed that.

Anyhoo, I'm fairly new to this having just been diagnosed with mets to my abdominal cavity this February. I was dog sick for over 2 years looking for a diagnosis. Every doctor assured me it was not related to my original dx in 2016. And then, boom, MBC. I started Faslodex/Ibrance in early March. Within weeks my abdominal started to diminish and now I'm feeling better than I have in years. The Faslodex injection is painful but tolerable. I get 2 shots monthly, after bi-weekly loading doses, and they're not entirely pleasant but definitely tolerable. I usually have a bit of a bump and sore spot at the injection site for a day or two. The Ibarnce hasn't seemed to bother me at all. Some infrequent VERY mild nausea and minimal diarrhea. I had mild fatigue when I started treatment but that's no longer bothering me. I still have significant joint pain in my hands, feet, hips. It got better when I stopped Letrozole about 2 months ago but I think it's here to stay. I've read that it's also a side effect of this treatment. I ordered some glucosamine/chondroitin/msm supplements to see if they help. Someone on this board has recommended it. I'll report back in a month or so to let everyone know if it works.

Good luck!! It sounds like you have a lot on your plate but I'm so happy to hear that you have a wonderful support system with your children. And good for you for defying those odds. I love hearing these stories. I'm 52 so about the same age you were at diagnosis. I want to be here for graduations and weddings and grandchildren and stories like these give me hope. <3

[Hidden]

I’m a newbie myself, but you sound like a living miracle to me! May you continue to be blessed! And just because there is no cure doesn’t mean there won’t be. I’m holding onto that.

[Bestbird]

This can be very unsettling, but you may want to have a few tumor marker (TM) tests, and scans, before switching treatments. Typically doctors do not switch treatments based upon TMs alone. Only after scans depict an issue do they change therapies.

The Faslodex/Ibrance combo is a very viable one for people with bone mets if you do need a new therapy. Many people do very well for years!

With good wishes.

[Dawn53094 in reply to Bestbird]

Hi Bestbird, I remember you from Inspire. Yes I’ll be having scans first.

[BluHydrangea]

Welcome Dawn! Sounds like you have been through a lot—and have overcome much. I am just beginning my MBC journey diagnosed in Jan 2020. I wish you all success with your new treatments.

[8576]

Hi Dawn: You have come to the right place for great info on MBC and venting. Also just to help you along the journey. Don't worry there are lots of medicines to help. As I understand it we are a long way from leaving this world. So you can start planning your next project or doing something fun.

Cheers, June S.

[library2019]

I have cat scans every 3 months to check where I’m at can’t believe the dr doesn’t test you more often

[Dawn53094 in reply to library2019]

Hi, in the beginning I received Avastin with Femara. I was in a study. I had scans every 9 weeks. About 3 years in I nearly died. I was going into kidney failure, pneumonia, major infection in my port. I landed in hospital. My oncologist got so frustrated, he removed the Avastin, said my body needed a break. I was removed from the study. It took about 2 years and I remained stable cancer wise, and my body healed from all the other crap. He stopped scans then to. I have been stable this past 5 years. Just within the last couple months my markers are going up. So I’m having scans on Monday.

[library2019 in reply to Dawn53094]

Good I had similar experience with Zeloda it really did me in

[Dgarrett]

I’ve been on Ibrance/Letrozole combo for 5 years since my Mets diagnosis in 2015. I do get an injection of xgeva every 2 mos. so far treatments have been very tolerable with stable scans every 4 mos. Prayers for a successful change in treatment.

[cpidacks]

Hi Dawn: Welcome. I have been on Faslodex for 15 months. I find the shots very tolerable. I sometimes have bruising, soreness and a hard area underneath the skin. It helps to massage the area and it will go away. I sometimes have itching and hot flashes, but these are all tolerable. I have two nurses give me the injections at the same time. This past month I had my oncologist and a nurse give me the injection. Try to relax your bum when they give you the injections. Don't tense up. I find walking after my appointment helps also. In the winter the heated seats in my car feels good. I have been stable on the Faslodex. I have a liver tumor. I have scans every three months. I don't understand why you have not had a scan in 5 years. Let us know the results of your scan. Good luck to all of us in our journey.

[mariootsi]

Easily tolerated. Have them inject slowly, warm up shot and relax you leg. It really helps. You may be sore but I walk a bit after and use a heating pad. Feel better next day but usually fatigued.

Good luck. I wish you well!

[hdhonda]

Dawn,

Welcome!!! You had a really good response to Femara.! I have been on Ibrance/Femara for over three years. The Ibrance makes me tired, but other than that, I am doing good. I am on 125 mg. I am 74. You give us all hope for a long life. Let us know how you are doing. Blessings, Hannah

[Julie2233]

I was 48 when my primary breast cancer was diagnosed and 50 when I was diagnosed with mbc, widespread in the bones but nowhere else. . Faslodex and ibrance were my first line treatment and they were a good combination for me and kept everything stable for 18 months. To start with I experienced fatigue but that subsided as did the bone pain. It was a huge disappointment to find it had stopped working as many people on here get far longer from it.

There is also loads of good advice on here about making the injections easier. I followed the advice and didn't find the injections to be an issue.

[Sunny2020 in reply to Julie2233]

What happened after if stopped working? What are you on now?

[Julie2233 in reply to Sunny2020]

I've had a bit of a journey. Ibrance stopped working in August last year, I had progression to the liver. My oncologist said that he thought the nature of the cancer had changed and was no longer hormone positive. I was concerned that he couldn't offer me a biopsy to check and the assumption meant that a range of drugs would then be out of the picture.

He wanted me to go onto pacilitaxol immediately. He wouldn't offer me radiation either. With ibrance I'd got my life back, the pain was gone and I was working full time and enjoying my hobbies - walking and photography. I didn't want to be tied to weekly chemo sessions so I asked him to try something else first. I had 3 months of afinitor and exemestane. This was fine until I caught a bad cold after 6 weeks. It knocked me for 6, and they took me off the drugs for a couple of weeks. My scan in December showed further progression. Can't say I was sad to stop the afinitor combination.

I still didn't want the restrictions of paciltaxol so I entered a trial of another IV chemo drug called cabaziltaxol which was given every three weeks and so meant my life wasn't so impacted, but at the three month scan in march there was further progression so I was moved onto xeloda. I had a scan last week and hopefully will get the results next week. But my bloods have improved, my cancer markers have stabilised and I've put the weight back on that I lost when I was taking afinitor.

I will be really disappointed if I have progression again but the oncologist has said that there are still plenty of options available to me including paciltax, it's just a matter of finding the drug that will work for me.

I'm still working full time at home as the office has closed temporarily (often doing 40+ hr weeks at the moment) I haven't been able to get out with my camera much but that is because of coved-19 not because of my health. My aunts had breast cancer in the 80s and 90s and there was virtually no treatment options and the ones that were available were brutal, things have changed greatly with new drugs.

One further comment on statistics, they don't apply to individuals only groups. I don't ask about prognosis because I work with statistics in local government. An average is useful for planning services but no one is average. There are so many factors that affect life expectancy, many of them aren't even recognised yet, you are better off with a crystal ball. Even when you reach the end of the line with the drugs different people react differently. My favourite thought is no one is promised tomorrow and anyone can get hit by a bus. 😊

[Sunny2020 in reply to Julie2233]

Wow. Interesting story. And thanks for the very insightful info. Please keep us updated with how you are doing! Good luck and I pray 🙏they find the right drugs for you.

[Julie2233 in reply to Sunny2020]

Thank you 😊

[Dawn53094]

My oncologist said he’s heard it’s best to give both same time and laying down. Has anyone done this?

[Julie2233 in reply to Dawn53094]

I started having the injections lying down and it was easier for the nurse, but I found standing made it easier for me to properly relax the muscles.

[PJBinMI]

Nine years on Femara is very promising! I got almost five on it and then over 9 years with Faslodex. One thing I really liked about being on Faslodex was that I didn't have the daily pill reminding me of the cancer, lol! Faslodex is a very thick viscous liquid and can be a challenge to nurses' thumbs to inject. I happened to get a look at the written injection "protocol" for it at the cancer center where I am treated and it said that each injection of it should take at least three minutes to inject. Early on, an experienced onc nurse suggested that I relax the hip being injected and lift that side's foot off the floor a bit. I would lean on something, usually a chest of some kind, but even the wall if something else wasn't available. Also, as others have said, it helps if the Faslodex is warmed a bit before injection. It is refrigerated. The pharmacist at the cancer center would always take all the Faslodex to be given that day out of the fridge when he/she got there at 7:30 am, so it was usually almost room temp by the time I got there, but sometimes we'd warm it more by putting it in a closed fist or my arm pit! All those little tricks do make it more comfortable. When I first got it, I would be tired the day of the injections and sometimes the day after but once I'd had it 3 or 4 that got better and soon went away totally. Since you live in Wisconsin, a resource for you to know about is bcrecovery.org in Madison. In normal years, before Covid19, they sponsor two mbc retreats a year at a wonderful spa in the Dells. The spa is in the woods, very private and quiet, with deer and other wildlife wandering about. I went to this retreat quite a few years ago and found it absolutely wonderful! I don't remember if it was over 2 or 3 nights. We each were given a free spa treatment--I chose a massage. I don't remember what the listed price was for the retreat, but it was very reasonable and they offer scholarships to women who can't afford it. It was well organized, there was an RN on the staff, and we were told right off that if we needed to skip any of the weekend's program to rest, that was not just okay, but expected! (I'm across the Lake in SW MI) A suggestion I always have to those with mbc, or any cancer for that matter, is to get a second opinion from a specialized onc (a bc onc in our case!). The best place to go is a Comprehensive Cancer Center where they have bc oncs who do both research and see patients. They have all the latest info and see hundreds of women a year with mbc. Most oncs will be supportive and helpful about arranging that. You have a CCC in Madison. My own onc suggested that to me, and I saw a bc onc at U of Mi CCC not long after diagnosis. I hadn't really felt the need to do that but ended up being very glad I did. My husband and grown daughter went with me and as the onc talked, after examining me and seeing all my scans and pathology reports, etc, I could feel their tension leaving the room! She told us that I had years not months and those of us with E + cancer cells who do well with first line treatment (like you and Femara) generally do well for a long time and that we don't generally die from bone mets only. My original very experienced "old and wise" onc retired about two years ago, and my new onc suggested I go back to U of Mi for a second opinion again, and again it was reassuring. You mentioned being a person of faith. When I have scans or other tests, my prayer is always "let anything that needs to be known be shown." I hope you will find a place of peace within this crazy cancer journey! The covid pandemic sure does not help!

[hopenowandtomorrow]

Hi Dawn: Welcome to the group. You have an incredible survival story. Praying that your treatment options work & have minimal side effects. This is the most supportive and helpful group of MBC women I have ever found. You can share the good, the bad & the ugly with us.

Sending hugs & prayers.

❤️🙏❤️

[kearnan]

I never think of our condition as knowing the end will be that we will die. I don't consider a disease terminal if people are living 10 years after the diagnosis which I seen alot on various boards. I am now into it for three years, lungs and spine and I have had two "healthy" friends died unexpectedly. One apparently had a heart problem that he was unaware of and another from a minor condition that took a worse turn. Both of them were younger than me and I am in my 60s. I had a friend die at 42 with three young children who had been diagnosed with ovarian cancer and less than three months later she passed.

In the end we all die anyway. I could die from about 100 other things other than this. I think of it as (and as my cancer center in Brooklyn, ny) calls it, it is a chronic illness. Like others that have heart problems and have to get pacemaker and be on medication for life and go info tests and such.

Look at the pandemic. I live in NY where we lost over 20,000 PEOPLE in a few weeks' time and I am still standing. I just live day by day and don't concentrate on when I am going to die. We all are eventually. Not scared bc like you I have strong faith but I do not want to waste time worrying about when it may happen. I could choke on a piece of food.

I just want as little pain as possible. So although I feel a bit worse than the first year, I can still get around, see, read, hear, feel, etc. I always think there are so many worse diseases like ALS or Parkinson's where you lose the ability to walk or feed yourself.

It's all in the mindset one has.

[SMPG]

Very well said!!

[hanus]

I am just getting off Ibrance (125 once a day) and Faslodex after 6 months as they have stopped working. Hope they last longer for you. You have already beat the odds, so you go girl!! I am waiting on CT with contrast scans to figure my next move. Would like to try ablation or embolism on liver mets rather chemo. I want this stuff OUT of me, and would rather have surgery than take chemo. Good luck to you and God bless.

[Judianna]

After MBC diagnosed I was on femara 3 years. My onc confided it usually only lasts 6 months ! Was on faslodex injections 2 years until tunor markers started to go up .. the nurse giving injection made a world of difference...I finally got so I would only come on day she was there.Needs to be in muscle in upper buttocks...she warmed it next to her body as it is stored cold and is very thick . The nurses who didn’t do this had a hard time injecting and took longer. She also palpitated the immediate area of injection first .. I barely felt it and felt better after.

Am now a new Ibrance/letrozole patient .. working so far.. worst issue is arthritis. Good luck