Looking for trials to live longer

[Markayjay]

I developed breast/bone metasticed cancer one year ago after 8 years of cancer free. For past 8 years rode my bike everywhere and worked out 3 - 4 times a week. I'm 64 and pray I make it to 65. In December I had two rods in my left upper leg they said the cancer was breaking down my hip, then radiation treatments , 18 sessions of chemo, went from wheelchair to walker. Now on chemo pills. Doctor told me when I die I'll die of cancer, radiation doc said I have two years left

[TNBC16]

Hi Markayjay ,

I'm sorry you received this news. Hearing you have a certain amount of time left is terrifying. My question is... do they really know how much time you have? My oncologist told me she would never again tell a patient how much time they had. She once told a patients she didn't have much time and suggested that if she wanted to see her daughter marry, they should move the wedding up. They did. Went through all the reorganization, spent a lot of money...and the woman is still alive today. This was years ago.

What do you know about your cancer? Subtype? What was the chemo? Also, where do you live? Not sure if you heard of bctrials.org. They have a metastatic trial search on the site that will show you trials in the US.

Hope this helps a bit...

Hang in there!

[Markayjay in reply to TNBC16]

Thank you, I live near downtown Chicago , right now in Venice Florida , yes trials are good to hear about.

[Hidden]

Stay on chemo pills until they stop working and try any other tested treatments your doctors recommend before going on trials which are wise only when you have run out of options since whole reason for trial is that effectiveness and side effects are not yet known. Many of us have outlived predictions going from one standard treatment to another. Good luck.

[Markayjay in reply to Hidden]

Thank you , I have heard that once before, I'll be going to a big good hospital in Chicago when I get back from Venice Florida in late December

[Rhwright12]

Hi Markayjay!

The radiologist just gave u a standard number. I have MBC to bones also. He shouldn't have said that not knowing u, how u exercise and take care of yourself etc. And it also doesn't take into an account new medicines and the fact that it's BC not cancer that started in the bones. I'm on Zometa for it. If u go to their site their survival numbers are like 3xs higher than just a bone cancer in general site.

Stay strong. Take your calcium and D3.

Sending prayers!🙏🏻💕🙏🏻

[Markayjay in reply to Rhwright12]

That makes sense to me, checking on zometa, I do excercise. Thank you

[Partia in reply to Markayjay]

I forgot to add mine is in my bones as well and I am taking zometa infusion once a month.

[Markayjay in reply to Rhwright12]

Thank you, I'm on the chemo pills & been told not to take vitamins & I was a big vitamin taker, I still sneak them in

[Kats3 in reply to Markayjay]

I'm on Zometa infusions also. The newest help for strengthening bones is Xgeva which is a shot given once a month. Tomorrow I'll be getting my last Zometa infusion for a while. I will have had 24 infusions in 2 years. The doctor said that I'll now get the Zometa infusions once every 3 months, then maybe later once every 6 months. These shots have really helped my bones get stronger. I'm also on the chemo pill Xeloda. My markers are checked every month and so far I'm within an acceptable range. Should my tumor markers rise for 3 months, something else will be administered to me. I think it'll be Ibrance. I hope I can stay on the Xeloda for a long long time. I have widespread bone metastisis, no soft tissue involvement. And I hope it stays that way!!!

I like my Oncologist. He's keeping a very close eye on me. I had 2 Oncologists before him who were located in a city away from me. They were impossible to get ahold of! Now I'm in a Cancer Center in my own home town with a doctor who actually calls me up if I have a particular problem. I was shocked the first time he did this! What a reassuring feeling to know that when you call, a live person actually picks up the phone and says "hello!" If it's something serious the doctor calls me before he leaves to go home.

My doctor okays my taking of vitamins and supplements. I take extra Calcium with D3, Milk Thistle to help keep my liver clean, a good multivitamin from a Health Food Store which is all natural, organic, etc. I even started doing some juicing of carrots in a juicer I recently purchased. Carrot juice is supposed to be really good for the body. It goes directly into your bloodstream. So I'm doing both conventional medicine and supplements to go along with it. I do know that I have more energy with the vitamins.

There must be some reason for your doctor to say no to you using vitamins but I can't for the life of me know what it is. I bring everything extra I take to my doctor to look at and be approved. He's said yes to it all. Oh, I also sprinkle turmeric on my food when I think of it. I've read that turmeric has anti-Cancer properties. The real name for turmeric is cucurmin. It's written up in all the Anti-Cancer books.

Wishing you strength and sending you positive energy that you'll stay strong in the fight that we're all in! Best of luck!

Kats3

[Ibelong in reply to Kats3]

Love the fact you choose all the bells and whistles wisely. Just a little additional fyi, turmeric is great for inflammation. It helps ease joint pain caused by inflammation. It is great!

[Meadesmith in reply to Kats3]

i love everything you are doing, you are your own advocate and you are a partner with the doctor. IMO this is a winning strategy! I take a ton of vitamin, brian nootropics, juicing, yoga , walking , mediating ....Ibrance/letrozole xgeva. moving to cancer free....closer and closer.

i second turmeric, take it every day. i drink a lot of ginger tea, staying hydrated.

[BeautyThroughBeast in reply to Kats3]

I get Xgeva shots monthly for bone mets too. Thanks for the other tips!

[marlayne]

One oncologist told me I had 2-5 years...I left her and the oncologist I have now said she would NEVER tell a patient how long their life is. They DO NOT know. In order for a Dr. to tell you exactly how long you have to live you would have to be put into a category with women your age,with your exact cancer and your exact lifestyle. Not happening!!! I intend to live a long time. I am a 20 year survivor of Stage 0 DCIS..radical mastectomy with 19 lymph nodes removed in 1996. I turned 59 in September and have prayers, great doctors, support and love all coming my way.Positive attitude helps as does the right doctor. Stay strong.

[Hidden]

Markayjay, First, I love your photo. You look wonderful. I'm sorry that the doctor gave you an expected life span, without qualifying that nobody ever knows how each of us will respond to treatments. I had lung and brain tumors in 2007 and 2008, and I'm still here. As to clinical trials, the trend today is not to let them be a last ditch effort, but rather to potentially enroll in a clinical trail early-on, if need be. We always have the "standard of care" anyway and clinical trials are an opportunity to try a new drug. Nobody gets a placebo (or sugar pill) any more, some clinical trial enrollees will get a standard of care along the experimental drug, while others will just get the standard of care. And today's FDA-approved drugs were once in a clinical trial. Drugs tested in phase II and phase III clinical trials have already been tested for safety in a phase I trial (meaning that in a phase I trial a drug has never been tested in humans). SHARE did a short 3-minute video about clinical trials. The lovely lady in the blue suit has been on several clinical trials:

sharecancersupport.org/hold...

Here's some information that debunks the myths about clinical trials:

learnaboutclinicaltrials.or...

(the videos show actual patients. I know the man with his grandchildren, Jack Whelan, you can find him online and on Twitter.)

Joan

[Markayjay]

Thank you, hope and pray we are all doing good

[Partia]

It is so hard. I was good for 15 years and it came back. I pray everything works for you and you blow your doctors prognosis right out of the water. My first doc said I had 14 months to live and six months into that 14 months I am feeling better. Hope it continues. God Bless you

[MaryJ-S]

I am sorry to hear that your MBC is interfering with what you love to do! What I read about my diagnosis (IBC and invasive ductal) didn't give me much hope when my cancer came back within a year of finishing initial treatments. But, fortunately I never heard that from my doctors. They have been very supportive and believe in quality of life and positive attitude. I know it is tough but it sounds like you are making some progress if you are no longer in a wheelchair. Keep at it, spend time outdoors and with family and friends. I have been living with MBC to bones and lung for 11 years! YOur radiologist doesn't know how strong and healthy you are and with a positive attitude plus treatments you will be around for a long time! Best wishes!

[Meadesmith]

i agree with posters about life span. no one knows, this field is changeing sooo rapidly. My doctor said definitely 10 years , probably 20. i am doing well on ibrance, but i hear there is a super ibrance coming.

consider your friends, without cancer, do they consider their life span? no, but we have to face it. So live as well as you can as long as you can. i was almost in a car accident the other day lol. driving to the movies to meet girl friends....live well my friend!

[Kats2]

Hi Markajay, How are you doing today? Don't take to heart what your docs say about prognosis. Only God knows. Let us know your progress. Are you on Xeloda? What chemo pills do you take? And what did they say at the Chicago hospital? Wishing you good days ahead!! Kats3

[1998withStage4]

Try the website cureforward.com for clinical trials. It's a relatively new site that focuses on patients and how to get them to the right trial. I've been living with mets to my bones since 1998. Don't let anyone give you an expiration date!

[Mariluis]

Just remember any time lines are always a best guess. No one can predict for certain what will happen in the future. Turn to your source of strength, whatever that may be, God, family, any form of spiritual strength and don't live in fear. I'm talking to myself as much as to you. Don't waste the time you have left to you. Stay strong!

[diamags]

MaryKay, I'm sorry to hear of your situation. I too started with an onc. who kept telling me I would live a long, long, life. As I was 51, I was curious if that was into my 90s, because that's what I consider a long, long life. Clearly, that was not the correct answer. I like to know the truth. When I found my doc at Northwestern's Lurie Comprehensive Cancer Hospital in Chicago, he gave me the honest answer -- that my cancer would do what it was going to do, there is no knowing. I appreciated his honesty. I would highly recommend the care there. I'm 3.5 years from the Stage IV diagnosis and feeling good.

[CMDec]

Stay strong.

[janetjanssen]

God bless you. This cancer is just hard. Praying God gives you many good days ahead!

[Hidden]

Hi Markayjay,

You're 64? You look so young and healthy! I'm optimistic that your lifestyle will help you exceed the odds! Is it possible that the doc gave you the average, so that you could sort of pace your life accordingly, knowing that you could well live much longer?

I do want to play devil's advocate on the life expectancy issue....Yes, we know that there are long tails on that curve, and we each hope to be on the far right side of that graph (! ), but I, for one, really wish someone would create a database and crunch the numbers to come up with MY curve, based on the hundreds of variables that matter....age, subtype, lifestyle, etc.etc....We all make decisions that are based on some assumption re: longevity...e.g. financial. Do I burn through my money, traveling while I feel well enough, handing out gifts to loved ones, or do I hang onto it since I might life for 15 more years? I'm actually going to write a new post re: this topic since I sort of wish that the taboo re: docs sharing numbers would be lifted....