5 years survivorship, 1 year mBC, new Scan results- lets celebrate together

New Flower · May 2013

Hello my dear old and new friends,

Sorry, I have not been posting lately due to high fatigue and side effects from experimental drug.

This week marks my 5 years Survivorship from stage IIIC and 1 year mBC. It has been a wild ride with incredible swings up and down, being in Marianas Trench, and climbing back. I would like to thank you everyone here on this board who has helped me getting through 5 years and many Pink Angels who are watching over and keep us safe.

I had my Scan last week and it is stable. Yeah!!! my oncologist is very pleased because she was very concerned about change from cytotoxic Chemo to anti-estrogen and experimental drug BKM120. BKM is PI3K phosphatidylinositol 3'-kinase inhibitor . Molecular testing of my breast tumor tissue came back with results showing that I have no alteration in PIK3CA and PTEN and benefits for me are unknown and will be identified by the end of this study. My oncologist thinks that we must use every opportunity, including unknown benefits , so where we go taking 2 capsules every day and writing a dairy about my overall health, side effects, mode, dreams, and desires trying expand my role beyond "human subject" and experimental rat. Labs are taken every two weeks, yesterday was 14 tubes, pages of questionnaires. personally think this drug can be used many other purposes: like to for loosing weight very fast, or having weird dreams under hypnotic treatment.

Wishing everyone be healthy and continue this fight to the full victory

Love

New Flower

Jean 0609 · May 2013

Hi New Flower!

It is so good to hear from you, my friend. Thanks for the update. You are amazing. So happy to hear that your scans were stable.

Keep fighting.

xoxo,

Jean

Josie21 · May 2013

Hi

Hi New Flower,

So happy to hear your scans came back stable. It sounds like you have been to hell and bacK, but thank goodness your new drug sounds like it's doing its job. So great to hear good news!

Hugs to you,

Ginny

aisling8 · May 2013

Josie21 said:
Hi
Hi New Flower,

So happy to hear your scans came back stable. It sounds like you have been to hell and bacK, but thank goodness your new drug sounds like it's doing its job. So great to hear good news!

Hugs to you,

Ginny

stable sounds good!!

That's really good news, Olga.

I know this has been a grueling road and you've walked it (limped it sometimes?) with such courage and dignity. I'm so happy to read the word stable.

What a great birthday present. You happen to share a birthday with my daughter-in-law so I know it's coming up.)

xoxo

Victoria

Bella Luna · May 2013

How fantastic to hear your

How fantastic to hear your scan results were stable! I celebrate your good news! So happy for you!

Double Whammy · May 2013

aisling8 said:
stable sounds good!!
That's really good news, Olga.

I know this has been a grueling road and you've walked it (limped it sometimes?) with such courage and dignity. I'm so happy to read the word stable.

What a great birthday present. You happen to share a birthday with my daughter-in-law so I know it's coming up.)

xoxo

Victoria

This news really makes me smile

I'm so happy you've had this news and what you're doing is working on keeping those cells coralled. Keep o keeping on.

Hugs,

Suzanne

ladyg · May 2013

That is such

good news. It is always good to hear stable. Sound like your new meds are working and I hope that continues for you well into the future.

Hugs,

Georgia

sea60 · May 2013

Celebrating with you!!!

Olga, this is such great news. I hope and pray results only get better and better.

Hugs,

Sylvia

lynn1950 · May 2013

I am so happy to hear from

I am so happy to hear from you. BKM does not sound easy. You are such a full, vibrant, lovely person. I wish you the best. xoxoxox Lynn

New Flower · May 2013

lynn1950 said:
I am so happy to hear from
I am so happy to hear from you. BKM does not sound easy. You are such a full, vibrant, lovely person. I wish you the best. xoxoxox Lynn

Thank you for your kind words

it is not an easy drug. To have a full swing celebration my doctor took me off this for a whole week!!! Now I can feel and tase food again. Today is the first day I am feeling myself since a very long time.

I am glad that Sylvia is ok, I heard about bloading in San Antonio. Vicroria , do you have whole family under the same Zodiac Sign?it is easy to manipulate when you understand your partner.

Love you all

Olga

camul · May 2013

New Flower said:
Thank you for your kind words
it is not an easy drug. To have a full swing celebration my doctor took me off this for a whole week!!! Now I can feel and tase food again. Today is the first day I am feeling myself since a very long time.

I am glad that Sylvia is ok, I heard about bloading in San Antonio. Vicroria , do you have whole family under the same Zodiac Sign?it is easy to manipulate when you understand your partner.

Love you all

Olga

Olga, Stable is good.
I am so happy for you that this combo seems to be working well. I think when we are stage IV, Stable becomes music to our ears!

Hugs,
Carol

CypressCynthia · May 2013

It is wonderful to hear from

It is wonderful to hear from you!!!! I am glad your scans are stable--yay!! I don't know anything about your experimental drug, but I love your spirit and am sending lots of hugs and prayers!!

Ann2800103 · May 2013

Hi NewFlower

HI It sounds like you are doing really well!!! My PC crashed and I had to get me a laptop. I am still having lupron shots and working less. Have had more SE then before. I have missed you. So sorry I have not been on here.

New Flower · May 2013

CypressCynthia said:
It is wonderful to hear from
It is wonderful to hear from you!!!! I am glad your scans are stable--yay!! I don't know anything about your experimental drug, but I love your spirit and am sending lots of hugs and prayers!!

I got a call from my doc today

I got a call from my doctor today. It seems like side effects are more serious than initially thoughts my liver does not like to go through too much pharmacutical stuff. I am off until my blood test will be back to normal, I have to repeat blood work and they will reduce the dose of experimental drug. I will keep you all posted.

I did not feel good for several days, but did not have a clue, however was keep drinking a lot of water. Well somehow I did detoxicate my liver without IV. We always know what is best for us.

Still very happy about my Scan results.

Hugs

sbmly53 · May 2013

So good to see your post

Keep fighting, be strong.

Sue

SIROD · May 2013

New Flower said:
I got a call from my doc today
I got a call from my doctor today. It seems like side effects are more serious than initially thoughts my liver does not like to go through too much pharmacutical stuff. I am off until my blood test will be back to normal, I have to repeat blood work and they will reduce the dose of experimental drug. I will keep you all posted.

I did not feel good for several days, but did not have a clue, however was keep drinking a lot of water. Well somehow I did detoxicate my liver without IV. We always know what is best for us.

Still very happy about my Scan results.

Hugs

Stable

Stable is a wonderful word, I personally love the stable boy. Kudos.

Livers can be fussy and I hope the water treatment and sometime off the drug will bring it back to normal. I once had 3 blood test in a row with AST and ALT going higher and higher. Then what ever was bothering my liver went away and both were back in the normal range. Hope that happens to you soon.

Best,

Doris

5 years survivorship, 1 year mBC, new Scan results- lets celebrate together

Comments

Discussion Boards