Hope!

[lucca7]

How many has been living for more than 5 years? Please I need hope!

[KMBL_]

Hi. I had a missed diagnosis. I’ve had cancer in my spine since 2013, but we didn’t find it until it spread to my stomach in 2019. I went six years with no treatment and have been in treatment since June of 2019. I have invasive lobular, and thankfully, it was and is a very slow grower. They have not been able to find a primary in my breast either. ILC is, indeed, very sneaky. My story is a long one with them hunting for the wrong cancer, and that’s why it was missed.

[bloomingdalechic76]

Dx at the age of 38 in 2015. Now 44. Working full time in intl dev, starting two NGOs, traveling everywhere, adjusting to life with cancer. Personal attitude is neutral, not positive and not negative. Just accepting and at peace which is so hopeful for me.

[Bettybuckets in reply to bloomingdalechic76]

I feel neutral too now with MBC, but was very very anxious 16 years ago when I was 44 and found The lump.

[SeattleMom in reply to Bettybuckets]

Betty,

Were you MBC de novo?

Linda

[Gwennie123 in reply to SeattleMom]

No

[Bettybuckets in reply to SeattleMom]

No stage 2- had 16 stress free years... not surprised it came back though as it was Lobular, I had one positive lymph node w/ extra-encapsulation of lymph node etc

My Dr gave me the DX and encouraged me to continue with my month long 60th bday trip around NZ... so I left 4 days after getting the bad news in July. I had the BEST time! Came home and started Ibrance/ Faslodex... 2 cycles into it and Onc says the markers moving in the right direction and the tumor in lymph node appears to be shrinking. So Next month I hope to have a good first scan!

[SeattleMom in reply to Bettybuckets]

Good for you!! I was symptom free for 17 years following Stage 1 diagnosis in 2000. Started on Ibrance/Letrozole in November 2017 before small progression this past September. Now on Faslodex monotherapy. Prayers and 👍👍 for continued improvement for you, Betty!

💗💗 Linda

[Bettybuckets in reply to SeattleMom]

Hi Linda I live in NZ but have a Very close friend in Gig Harbor..her name is Linda too! I love visiting. You live in a very beautiful part of the country. I am on faslodex with my Ibrance... I was on mono therapy with faslodex for just one month... I was pain free until I went onto it and then had bone pain. I was never sure if it was a side effect or just my time to start feeling my bone Mets pain. Do you have any thoughts?

[SeattleMom in reply to Bettybuckets]

Hi, Betty!

I just completed my first three sets of Faslodex shots (you probably know the drill, first set August 26, second set 2 weeks later, and third set 2 weeks later, then on monthly treatment only). So, I'm really just into my second month on this treatment.

My labs on September 23 showed that CEA had dropped from 2.9 to 2.7, but CA 15-3 had slight uptick from 23 to 24. It sure makes it all confusing, but I'm hopeful that it is working. I did notice some increased pain over the past month to my iliac (where two mets lit up on a pet scan in August) but that seems to have subsided. So hard to know if pain was result of new treatment or progression? As if we need anything else to add to our anxiety?!

In any event, my love and prayers to you, Betty, as you circle around any and all roadblocks placed on this journey! Here's to many happy years ahead!!

XXOO Linda

[Bubbles001]

Almost 6 years for me. I know lots of women who have lived more than 5 years with this disease.

[diamags]

6 years for me, I have scans tomorrow, results Monday and if good, I graduate to 7 years. Scanxiety yes. It never goes away. I wish you the very best in this journey.

[Have-faith in reply to diamags]

I have scans tomorrow too. Good luck with yours! Faith

[diamags in reply to Have-faith]

You too!

[Gwennie123]

12 years

Numbers coming down

No pain

Hang in there

[Bettybuckets in reply to Gwennie123]

Question- I have back pain that has only come on with starting treatment...2 months ago... Before that I was pain free and was blissfully unaware... the dr says the labs show things improving.... but can you tell me, did you never have pain or did the trestment over time take it away? Or perhaps the no pain will only come from upping my pain meds?

[Gwennie123 in reply to Bettybuckets]

I had excruciating pain the first four days on Doxil. No cancer related pain since.

[SeattleMom]

Lucca!

Hang in there! I'm almost three years as an MBC warrior. Just started second line of treatment after success with Ibrance and Letrozole combo for 34 months. I am now receiving a monthly shot of Faslodex as monotherapy.

The anxiety never completely disappears but I remain hopeful of more time with loved ones. We are living in a period of hope for women with MBC. There are many more tools in the arsenals of oncologists!

God bless you!

Linda XXOO

[Gwennie123]

Sure

[Gwennie123]

Sure

[soleila3]

Hearing some positive replies give me hope for my mum who has had breast cancer twice over the past 10 years. In June had a terrible back pain and had radiotherapy on her spine last week and is now on Kapetral tablet. I have been so worried and anxious about the whole thing moreover I am far from her. Thank you.

[Hidden]

5.5 years since re diagnosed. Doing well . I am able to manage my home life and work part time .

[Amm1]

6 and a half years and looking forward to many more 🤞🏼

[Boogitymom]

I was de novo, diagnosed in January 2016, coming up on my 5 year anniversary. I am still on my first treatment of letrozole and ibrance 125mg. I never thought I’d see my daughter get married when I was first diagnosed but happy to say, I was there to enjoy every moment of her wedding in August. Stay hopeful, I believe our mindset can be just has powerful as the medicines we must take.

[Teddielottie in reply to Boogitymom]

That’s good to hear ! ... And I’m happy you were able to enjoy your daughters wedding ... Congrats! ! I’m coming up to 3 years and was thinking I might soon need to change but this gives hope of staying on it for longer . Could I ask if your wbc and neutrophyls stayed good all this time ? And do you have your tumour markers checked and how often your scans are now ? Thanks x

[Boogitymom in reply to Teddielottie]

I think I’ve had to delay my start of Ibrance maybe 3-4 times over the 4 1/2 years. My tumor markers have started to increase over the last 8 months, I have my CTs and bone scan every 3 months. I had my scans last week, CTs were stable, no change. I should get bone scan results early next week

[Teddielottie]

My tumour markers have never changed ,18-22 , but I’m not sure if they would over time . Good luck with the bone scan too x