Bone Mets Thread

LindaE54

Wendy - Yes Taxol improved lived mets very much. What complicates things for me is since I coded blue with scan dye contrast, we've been relying on abdominal ultrasounds which didn't pick up the peritoneal carcinomatosis. A CT scan without contrast from neck to abdomen showed the p/c. At this point I don't know how long this stupid p/c has been hanging around but I would think probably a good amount of time as I became symptomatic in May/June. I understand you wanting a change in tx, Taxol does take a toll on us.

jensgotthis

Dani_FR - great photos and wonderful to hear that you are able to get out to the pool while on Taxotare. That chemo is a beast! Enjoy it. Swimming is so wonderful and the added bonus of good sleep sounds magical

babs6287

spending a relaxing weekend with my DH brother sister and nephew in the hamptons. Tuesday were off to Israel. Can't wait!!!

AnimalCrackers

Babs - have a wonderful trip to Israel! How long will you be there

Iwrite

Dani- good for you! Looks so refreshing:)

Babs- glad you recovered from the infectionand are enjoying life! Safe travels on your Israel trip. Hope you feel great

Update- They did not find LM in the spinal fluid thankfully. Of course they repeat to confirm. All good for today! Thanks for the encouragement 🤞

babs6287

Iwrite that's great.

I leave Tuesday for 2 weeks in Israel-my SIL's step sisters wedding. We've never been and Israel is definitely on my bucket list The first week we'll spend with family and the second week touring. Soooo excited!

Bab

Wendy3

wow nice digs Babs loving the pool , have an awesome trip take lots and lots of picture so we can vicariously enjoy it as well☺️.

Kaption

Iwrite- that is really wonderful! Wish they could find a more reliable test for spinal fluid!

Milaandra

Babs...will they adopt me? I promise to do my chores and adhere to my curfew... LOL!

Lita57

Babs, can I stowe away in your largest piece of luggage?

Hilldegunn

hello. I'm new to this site and have noticed that there are not many new posts. I sure hope someone is out there to share. I recently have been diagnosed with the stage 4 with extensive mets in spine, ribs, pelvis, skull, proximal femur. No radiation planned just started ibrance and letrozole. Zometa infusions to start monthly after I complete my dental work. Would love to hear from anyone living with the same diagnosis. still in shock

Leapfrog

Hi Hildegunn, I'm in a very similar situation to you, with the same diagnosis and treatment. I was diagnosed in October, 2016 and had a bilateral mastectomy two weeks later. No radiation, treatment is Letrozole and Ibrance with Denosumab injections monthly for my bones. I promise I will get back to you tomorrow for you to chat to me. I live in Australia and it's late at night here right now. Hold tight, you're not alone my love xxx

Wendy3

Welcome Hilldegunn I'm not currently on the same treatment but changing things up at the end of September so I may very well be. You aren't alone there are many of us sadly. Many that are still here after years and years. You will get lots of help here and great advice. Big hug from Canada🤗

Wendy

vancouverdeb

Hi Hildegunn - I was diagnosed a year ago with mets ("scattershot" was how they described it) to skull, spine, ribs, pelvis & right femur. Mets in spine had left the spine and taken over the inside of three of my vertebrae - I couldn't stand up or sit up (had been told for 9 months that it was back pain and to take more advil). After six months of Xeloda (Capecitabine) I switched to Ibrance & Letrozole. Am going to gym, going hiking & pretty much enjoying life (just stretching every few hours). The first part's the worst (I think)..... hang in there - more hugs from Canada

cive

Hilldegunn: no new posts?  This is one of the most active threads! 

Lita57

Vancouverdeb...same thing with me..."Oh, you have back pain. Take Advil...in the meantime, the cancer has a field day and keeps growing.

So disgusted.

Iwrite

Hildegunn,

Welcome to the club 😳 this new life becomes more normal after a while. It is awful at first and many of us take anxiety meds in order to sleep/get through the fear. I've been on this drug combo for 21 months. No surgery for me. It was in nearly all my bones and they have healed and are stable. For now, I'm taking my drugs, eating healthier, hiking in the mountains, and the SEs improved. When you can exercise it will be the best medicine. You will be tired and achy while things heal, but then things feel better.

This is the one place you can discuss having cancer and no one freaks out or gives you the pitying look. The advice here is amazing. As a result the doctors tend to take us more seriously, I think, because our questions are based on science.

Read through some of the many pages on the thread. Very helpful, sometimes hard, always caring.

Sorry you are here! It's early and you have time!! Sending healing thoughts as you recover from surgery.

Hilldegunn

thank you all. Honsestly I've had myself dead and buried multiple times in the past month. Then I found this. I think because I'm new to forums I don't really know the logistics and wants to navigate thru the site. I look forward to healing and living. Not wallowing in self pity

Iwrite

You are allowed some self pity! This whole thing stinks!

When the shock wore off I dusted off some goals and began work on being in the moment rather than listening to what those inner voices were saying.

Over time I started to appreciate the time I have instead of worrying the time I'm goingto lose. Heaven knows I wasted a lot of time when I thought there was all the time in the world!

PHOTOGIRL-62

Hello Ladies.

Been crazy busy and couldn't get on the site this am. Just checking in. Tomorrow MO and blood work. It always throws me off for a few days from anxiety but I know I have all of you to lean on. Welcome to all the new ladies. This group is a lifesaver. Hugs to everyone today.

Anita

jensgotthis

Hilldegun, You'll find lots of activity here nearly everyday. So many knowledgable people with big hearts, and some with a little sass. :-) Come on over to the Ibrance thread too. It's a great group.

jensgotthis

Hiildegun - Here is a link to the Ibrance thread: Ibrance Thread

Leapfrog

Hi Hildegunn, Your diagnosis as being ER+/PR+HER2- is the best diagnosis to have when you find yourself in this unwanted territory. This is the most treatable category of breast cancer and ladies with this diagnosis can live for many years on hormonal treatment and there are many more treatments being researched that will become available in our lifetime.

I know it's a shock at first and, for me at least, the shock turned into disbelief. Now, ten months later, I've begun to absorb the fact that I'm living with cancer. All of us here have been through the same thing you're going through at the moment and there's lots of support for you as you go through the early stages so keep us informed about how you're feeling and where you're up to as you progress through this weird, unwanted detour in your life. It takes a lot of getting used to and, as others have said, the first part is the worst part. It's hard, we all know that, so if you want to vent you're in a safe place to do that and we'll all understand.

There are a lot of stages to go through before you start to realise that life can be good. I know that from where you are right now that might seem strange but, for me, having Stage IV cancer with extensive bone mets (exactly the same as yours) has focussed my mind to what really matters in life and the following approach has worked for me:

Don't blame yourself, you did nothing wrong, this is just rotten bad luck.

Learn to be selfish and by that I mean learn to put yourself first....a lot of women go through life making themselves their last priority...for me getting sick has taught me that I was there for everyone but myself and that had to change.

Take it one day at at time, don't look at the future, just take your tablets, turn up for appointments and between those times find things that make you happy and concentrate on those.

Live in the moment, each moment is a gift.

Appreciate what you have, don't focus on what you've lost.

This is a lot to process but, believe me, if you try to follow these steps you'll find that having cancer, frightening as the diagnosis is, doesn't have to scare you out of enjoying life.

Sorry this is so long but I wanted to share with you the way I've managed to get to a happy place despite my cancer. Oh, and I have to tell you that I've been completely incapacitated by my bone mets due to the pain and the stress fractures caused by the tumours and I still have a long way to go before I can get back to exercising.....I can't wait! But learning to be patient with your body is vital.

Stay with us and we'll all be here for you. Sending hugs.....

Maire67

Hi Hildegun. Welcome. Not on the same meds but somewhat new here too. Lots of support here. I was upset and thinking that this was it. Reading all the posts and getting good advice here has helped. Today I met a friend for a walk and lunch. I went out to dinner with my book club. 3 weeks ago I would have just stayed home. The shock and fear eased for me. Trying to live in the moment. Someone on these boards wrote "That day may come but it's not today". I don't know who it was but I'm taking it as my mantra. Take care.

Dani. Nice to see you are enjoying the pool. Babs,Have a wonderful trip.

Lita57

Hildegunn and Leapfrog...yes indeed, it DOES take time.

When my bone mets reached their peak, the paramedics had to come and get me and haul me to hospital in an ambulance. I was so incapacitated that I was in a wheelchair and couldn't even wipe my own butt. Someone had to help me shower, I couldn't stand up to do the cooking, etc. Then i graduated to a walker and now I only use a cane when I go outside. I Can walk unaided inside, using walls and chairs for stability if I need to. I even drive now.

Has it been easy? NO! I still can't bend over because of all my spinal compression fractures, but one day at a time, as they say. Sometimes I still feel like I'm in an episode of The Twilight Zone, but that's just how it is.

It sucks to be in this "club", but I've made some wonderful friends here, and you will, too.

Lita

Hilldegunn

thanks for the encouragement. I hear strength and that's what I want. Just started the meds. I have hip pain but ironically it's degenerative changes in my hip. Bone mets are in other places. Prior to this I have never been sick a day in my life!!! I mentally refuse to be ill

Dani_fd

Hilldagunn, I too had horrible hip pain, it broke because of the lesion damage, I had the pain for 3 months, likely was walking on it broken for that long-dont ignore it.

The pool was great, it put a huge dent in my Sunday though, I slept for a long time, was very tired but it was worth it. My spine has been killing me as of late though. We may do another round of radiation to the cluster of lesions-after 2 more chemo treatments anyway. Its starting to cause enough inflammation that's it's pinching nerves, my legs hurt

Also, does anyone know why my target therapies arent showing up? It's on my profile but nada. No matter. I'm gearing up for chemo again Friday. Hair is coming out, getting ready to shave it tomorrow, but pools and hats, many more trips to come!!

Xox ladies!!

Dani_fd

Eclipse anyone?

Milaandra

Hildegunn, Leapfrog is right...if you have to get stage 4 cancer, that's the one to get. Every body is different, but some hit the lottery and everything works great to suppress that nasty old cancer for years and years and years.

It's a new reality. The thought never really goes away...it's always in the back of your mind, it just gets less frightening over time. You'll find yourself making future plans and buying new clothes. Now and then you'll forget that you have physical limitations. (By the way, even the nice easy meds can affect you in terms of fatigue and side-effects like sore joints, so don't give yourself a hard time if you aren't what you used to be) At first I was freaked out the whole time. Then I was freaked out when I had a CT scan booked...then freaked out only after getting a CT scan...last time I didn't start freaking out until a week before I was to get the results (things are slow here). So over my three years post-diagnosis, I've had no progression physically, and mentally, things are improving.

People I work with are astounded that I can talk about this calmly and even make jokes. But it's just a twist of philosophy. People die all the time...accidents, embolisms, heart attacks, terrorist attacks...whatever! Often it's without any advanced warning. We have a head's up so we can choose how to live in the now and forget about holding off living until sometime in the future. (when I save up the money, when I'm retired, when I lose weight, etc. etc.)

I'm always saying to myself and others...anyone could end up getting hit by a bus tomorrow. What's the difference, really?

JoynerL

Ladies, beautifully written and expressed. Leapfrog, your thoughts should be inscribed in a tablet and presented immediately to each newbie. Your words and thoughts are so true and so encouraging. Thanks from me, too, and I'm in my 7th course of treatment.