Looking for stage IV bc surviors still battleing the battle

tryn2staycalm

Recently dx with mets to lung now stage IV.  Any survivors in southern Ontario dealing with the same?  Or anywhere?

JustJudi

Hi I been battling Stage 4 for four years now, have mets everywhere, but treatments seem to  be working. I don't have lung mets, but I now if you go to Stage 4 forum their are ladies on their that are dealing with them..  I live in Mb. but I imagine health care is probably about the same.  Hope you get on the right medications, and you have a good Oncologist.

tryn2staycalm

thanks JustJudi.. sounds like you are doing great.  4 years and holding your own is great.. keep it up!

Kudra

Dear Tryntostaycalm,

I started almost 2 years ago stage 4 with mets to spine and pancreas. The pancreas scared the bejeebers out of me. My mother passed from pancreatic cancer in 2000.

After some time on Arimidex and Faslodex (with xgeva for bones) my last 2 scans have shown no pancreatic mets. None. Zero. My spinal mets have regressed some.

I guess I'm just trying to say mets come and go. Please keep reading threads. Stage 4 has a lot of great information and some amazing women who have helped me immensely when I've let fear get the best of me. 

I've even read of women who were told they had lung mets that ended up being scar tissue from childhood. 

I'm not saying that's the case, but just take one day at a time, one step at a time. It can change for the better. 

Much love and hugs!

tryn2staycalm

Great to hear this Kudra.  I actually have had the lung "nodules" for 2 years.  While I was on tamoxifen they stayed stable.  Onco was unsure what these spots were but following with scans.  I had such severe s/e from the tamoxifen I stopped taking it and now the lesions grew very quickly and also a new one.  Love to hear that they can regress and even hold stable.

poniesandpuppies

---

I'm here an I'm new:(

In Vancouver.

Was here before in 2006 for original diagnosis

Guess I'm back as of nov 28 as pet scan stated lung mets

Original diagnosis I was 30 years old now Im 39 for round two

Get this kicker : new diagnosis exactly 14 day before my 9th anniversary of original diagnosis!!! Isn't that just F'ing awesome!!

Moderators

poniesandpuppies, we are so sorry to hear this! We're here for you, and you aren't alone! When do you start treatment?

poniesandpuppies

I guess I'll cross post - not exactly sure what that means

This is the post I made over in the meds and lung thread - just some highlights --

Hi

Well i have not been on this chat forum for years - my bad I guess not offering support - but I needed to walk away and move on and live not be breast cancer. Well here I am again.

14 days exactly from my original diagnosis (Dec. 12, 2005) my original diagnosis I was 30 years old - it was invasive ductal carsanomia with lymph node involvement - I did ACT chemo and rads- big lateral mastectomies with reconstruction - tamoxifin for 5 years then ooperectomy then back on tamox after 2 years off. Last Nov came off of tamox due to DVT and blodd clots. At the time of clots my tumor markers (ca 15-3) went up 356 test test test - couldn't find cancer - went on letrasol markets got down to 159 as of sept. - markers jumped up this month to 209....... start all the testing again....

I am now told that my PET scan shows spots on my lungs. Not one - some big enough to measure some very small (I have no idea what this means). So this is me - completely lost and feel like a fish out of water.

Oncologist called me on the phone Friday "sorry I didn't want to do this over the phone, but I'm away all next week and I didn't want you bring told this by your gp or you getting your hands on the report and me being away not being there for you. The results of your last pet scan are in and there are some spots in your lungs that light up - the report indicates that these spots are ........ (me fading to black)........ some spots have been measured some spots are so small they didn't measure...... (me zoning out)............ we will change you from letrasol to a stronger estrogeren blocker and talk about chemo.......... (um he was talking I was not absorbing)....... I will see you Monday Dec 8 so we can talk about this"

Ummmm i think I asked some questions - like is this bad? My cancer is back? I honestly don't remember much about the conversation......... cancer - lungs - chemo ------ holy crap mental shut down

I don't know anything about this - I don't have any knowledge about this ---- ask me anything about breast cancer and treatment and surgeries - I know that ------- this I got nothing:(

So I jump on here - find this thread - gotta say you women rock!!!!!!! Finally some people that know stuff!!!!

I hate hate hate that anyone had to go thru breast cancer the first time - it f'ing pisses me off that any one has to go thru it again and again or live with it!!!!!!!!

So this is me - where do i go from here???????

Me and adivan (who seams to not be helping!!!)

poniesandpuppies

well I have stumbled onto this group I need some help also dealing with the bullshit we Canadians call " fair pharmacare" I need help dealing with their crazy yearly deductibles - and how does one pay for all that and try and pay msp? They almost have us in bankruptsy 2014 with all my meds / and that before this newest diagnosis

Help with that please Canadians

Kathy044

<bump>

Hi ponies I am not stage IV but I have had my dealings with pharmacare deductibles and extended health over neupogen injections when I was on chemo. Just recently I was on the phone with pharmacare when my extended health requested once AGAIN to check with pharmacare to make sure I was registered ( I am).

I've bumped this message to bring it up to the top of the Active list. I am hoping someone reading on the Canadians in British Columbia topic (or Canadian Connections) will respond.

Kathy

Lolis197138

Hi Ponies,

So sorry you have to go through it again!!

Have you heard off Victory program? Not sure if it is available in BC but it covers the differential costs (whatever the insurance doesn't cover) for Neulasta shots.

Hopeful it is something that is offered in BC.

Hugs

jocanuck1951

Hi, there is a new Facebook group for "Canadians with metatastic breast cancer". Only for Stage 4...so we can at least, get a handle on the vastly different treatments available to specific Provinces. Trying to get a voice so we can be heard as Canadians, sharing treatments, friendships, hope. Please join!

https://www.facebook.com/groups/791178644292315/?r...

If the link doesn't work just PM me. Thanks, Joanne

208sandy

Guess it's too bad that you've moved to Facebook when many of us aren't on FB - sort of interesting that you're mining for members on BCO.

jocanuck1951

208sandy, It's all about sharing information. Canadian MBCers need a united, informed voice in dealing with our Provinces. Many Canadians don't have equal treatments across the provinces. Ummmmmmm....I still donate to breastcancer.org Do you

Boobiesister60

I am Stage IV with breast cancer mets and living in British Columbia.

MrsDarcy

Good evening ladies

I apologize for jumping in this thread as I am not stage IV but I wanted to share that i too have lung nodules and on tamoxifen. My last 2 scans (1 year apart) show no growth but I have them on both lungs. My onco is not overly concerned but I have managed to get a referral for a lung specialist and he will follow me

I am wondering if I should mention the possibility that tamox could be keeping them under wraps or not ? This is a new twist to tamoxifen for me - although I do not have any SEs except constant fatigue and not staying asleep (which could also be the hamster in my head and my turning 47 tomorrow lol!)

Please share anythung you would like. I can also open up a new thread so as not to ruin this one if preferred

Nite

MD

barbe1958

I'm in Southwestern Ontario. Does that help? Recently stage IV with chest wall recurrence. Almost done rads but had a horrid reaction to Arimidex with a bladder infection (2 rounds of penicillin!) and nausea that I got pulled off it for a couple of weeks. After reading these posts, I'm going back on it now - was supposed to be the 19th, but what the heck!