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SHARE Metastatic Breast Cancer

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Candu5 profile image
21 Replies

Im new to this site.

My second time around with cancer.

Breast cancer estrogen/progesterone + her2 negative stage 2 in 2011.

Made it to 2020 and learned I had cancer cells in my lymph nodes by my lungs and heart lining.

Im on letazole and verzenio.started in Dec.2020.

My cea tumor markers have dropped from 34 to 20 to 14.

Ca 27-29 from 185 to170 to 119 to 84.

No side effects from either drug...ok ...watery eyes just started.

My oncologist tells me Im stage 4.

I happy to say I don't feel stage 4 at all.

I take quite a few supplements and take 2 metformin tablets everyday.

Hoping i keep my immune system high.

I get a pet scan at the end of March.

Thinking positive!

I wish everyone the very best in their cancer issues.

Candu

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Candu5
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21 Replies

Candu5,

Welcome to the group and, as we say (since we mean it), so sorry you need to be here...

Wow, about nine years between initial and metastatic dx?! I think that bodes well for you...

Your tumor markers sound great, especially the CA27-29 which, from what my docs tell me, is much more accurate than CEA, But even the CEA has declined so sharply...good for you! :)

I'm glad you found your way here...there is an amazing group of people here who truly provide support, great discussion, and incredibly valuable information

I wish you the best with your treatment...Again, I'm glad you've joined...

Very best,

Lynn

LeeannW710 profile image
LeeannW710

Hi. Happy to hear about the decline in your CEA and CA 27.29 levels. That is amazing news! I think you will find comfort in speaking with the wonderful women on this site. They are all incredibly supportive and knowledgeable.

Hugs!

Welcome! Those are good numbers.

Once I realized I was not dying right away — after about two months of sadness — I lifted myself up and pushed in with the support of this marvelous group. We are here for you.

Candu5 profile image
Candu5

Thank you!

I have no tumors...just cancer cells in my lymph nodes.

I understand at stage 4 there is no cure.....however I strongly believe oncologists should promote the chance of remission .....mine promotes palliative care.

I'm no where near palliative care!!

Red1246 profile image
Red1246 in reply to Candu5

Hi and welcome Candu 5!

As others have said, we're here to support one another and I've found this group amazingly helpful in sharing info on their meds, side effects etc.

It sounds as though you equate palliative care with Hospice. I did when it was offered to me. They are related but different.

Fortunately I met with my palliative doc quickly after dx and she explained she is only there to help with pain meds (or those to fight nausea) and to make my life as comfortable as possible when needed. I'm only 5 months into treatment (Ibrance and Femara) and my side effects are some of the usual: fatigue and low white blood cells. I haven't needed palliative help but do take comfort in knowing the doctor is there for me if needed.

I too "don't feel stage IV". I'm guessing a lot of others don't either. I think we have this misconception when hearing the stage that our death is imminent and it's very frightening.

"It's terminal but treatable" is what I was told. I also asked for the survival statistics and I intend to prove they're wrong. They are, after all, only numbers. I have met and heard of many women with MBC who are in year 10 or more!

Glad to hear you're in good spirits and thinking positively - we need to be.

All best,

Red

Candu5 profile image
Candu5 in reply to Red1246

Spot on Red!

Let's prove them all wrong!

mariootsi profile image
mariootsi in reply to Candu5

I see a palliative care doctor. Best decision I have made. It's not end of life care. She helps me with side effects of treatment, B12 shots and monthly updates. Well worth it!

mariootsi profile image
mariootsi in reply to Candu5

She also has a therapist in her office to help with emotional issues.

Hi Candu,

Welcome on board! You sound like you have a very good attitude. I agree that oncologists need to do more than promote palliative care. I want to have the same opportunities as early stage patients, and I am hopeful of a cure. So I get where you are coming from.

Sophie

Candu5 profile image
Candu5

Right on!

I see my oncologist tomorrow and im having a discussion.😁👍

Welcome CANDU! Glad you found us! We are a great MBC bunch of ladies who are highly interactive, informative & encouraging. We share the highs & lows of this roller coaster journey. ❤️🙏❤️

Candu5 profile image
Candu5 in reply to hopenowandtomorrow

Thank you!

SoCalLady profile image
SoCalLady

Welcome and so glad your regiment is working. What are you taking Metformin for and what dose are you on?

Candu5 profile image
Candu5 in reply to SoCalLady

Metformin is for diabetes...which I don't have.

It also kills cancer cells.

My doctor is very proactive...she suggested it.....my oncologist also a woman did not go along with it....but I find many oncologist just stick to their old regimen and put blinders on.

Sad.

I take 2 a day with a smoothie.

The best to you!

Barb5 profile image
Barb5

Welcome to a great site with the best people. I learn more here than from any doctor everyone here always willing to help.

Candu5 profile image
Candu5

Amen!

hdhonda profile image
hdhonda

Welcome and best wishes to you. You will like this group. Best wishes. Blessings Hannah

Candu5 profile image
Candu5

Thank you!

The best to you!

Red71 profile image
Red71

Welcome! It sounds like you are living life with a very positive outlook. I thinks it makes a huge difference! Palliative care is not just end of life care like someone else said. It will help you achieve the best quality of life that you can have. You may not need it much at this point, or maybe not at all, but they are great to have in your back pocket, so to speak! Find out what they have to offer you so that you are aware of their services.

Elaine

mariootsi profile image
mariootsi

Candu,

Welcome. You have found a wonderful supportive group of women. We are all here for each other.

Happy for you that you are feeling well with no side effects. May it continue.

Love,

Marianne

Candu5 profile image
Candu5 in reply to mariootsi

Thanks Marianne!

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