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

New Flower
Posts: 4018
Joined: Aug 2009
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's picture
Jean 0609
Posts: 2327
Joined: Jun 2010

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
Posts: 347
Joined: Nov 2012

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's picture
aisling8
Posts: 1272
Joined: Feb 2010

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

Double Whammy's picture
Double Whammy
Posts: 2293
Joined: Jun 2010

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

Bella Luna's picture
Bella Luna
Posts: 1572
Joined: Aug 2009

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

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

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's picture
sea60
Posts: 2601
Joined: May 2010

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

 

Hugs,

Sylvia 

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

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
Posts: 4018
Joined: Aug 2009

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's picture
camul
Posts: 2062
Joined: Dec 2010

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's picture
CypressCynthia
Posts: 3973
Joined: Oct 2009

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!!

New Flower
Posts: 4018
Joined: Aug 2009

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

SIROD's picture
SIROD
Posts: 2161
Joined: Jun 2010

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

 

Ann2800103's picture
Ann2800103
Posts: 31
Joined: Oct 2010

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.

sbmly53
Posts: 1476
Joined: Jan 2010

Keep fighting, be strong.

 

Sue

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