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New Flower
Posts: 4046
Joined: Aug 2009
Hello my dear Pinks
I have not been posted lately, however you are always in my thoughts. In the end of February I have completed  a full 8 months (16 cycles) of Chemotherapy - Xeloda. My body could not take it anymore, however I am very thankful to this drug and the help I did get from it. What is my next treatment now? 
 
I have been involved with screening, qualification, and enrollment in clinical trials of Faslodex +BKM120 (PI3K inhibitor) for metastatic BC. In order to be qualified for the the study I had to go through series of tests, had enough tumor tissue for characterization and genetic testing, be positive, and optimistic, and healthy taking long and short walks, yet having stage IV, which stopped responding to previous therapy.   What I learn through this process that I am still sick enough to be qualified for the study, having several lytic lesions, and healing sclerotic lesions and fractured rib.  Just  going through this process and every little test and scan has made me feel much worse than before. No wonder when I have been constantly remainder that in fact I am stage IV. Initial research has shown that this drug, BKM 120 is crossing brain barrier, which could cause depression therefore the Sponsor, a pharmaceutical company,  wants candidates to be happy with ongoing life, optimistic, having overall a pretty good health, yet have mBC (LOL).  
Unfortunately it is a double blind study, therefore we do not know that it even worth  to try, however per my doctor suggestion I am doing it. Almost 3 weeks has passed before I was enrolled and today I have had my first treatment - Faslodex 2x250 mg shots. Any helpful tips for mitigating its side effects will be highly appreciated. In addition, 10 tubes of blood were collected. Two weeks from today I will be given BMK120 or placebo. My chances are 50/50%. Since the cancer is aggressive and does not respond to anti-estrogen medications, my doctor thinks Faslodex and X-geva will be not enough to keep cancer under control. Let's hope I will be given a chance.  if not… at least I will  help development and approval of this new drug to reach market and becomes BC treatment.  
 
Yesterday I got a very positive news from Claudia:
she wrote:
"And the good news is I have gained 8 pounds , better news is my tumor markers are down 48 points  and the best news is my liver enzymes are normal. Yes I still have cancer but I'm getting well"

Thank you everyone, who is help me throughout this journey. I am too tired and going to rest today
I wish everybody to be healthy surrounded by love and hope for the best to come.
Happy Spring, Passover &  Easter - the holiday of your choice.
Love 
New Flower

 

Andy0102
Posts: 6
Joined: Jan 2013

I am only stage 2 so cannot imagine what you are going through but hugs and prayers coming your way. Stay strong and hope the side effects aren't too bad. Best of luck
<3 Andy

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

Olga... what a tremendous road you are on.  Not easy and I feel for you.  Keeping you in my thoughts and prayers.  May God grant you the Strength to continue moving forward.  Hugs.

Ines

 

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

Big Hugs to You.

 

Double Whammy's picture
Double Whammy
Posts: 2303
Joined: Jun 2010

What an ordeal you're facing, but it sounds like a positive and hopeful one.  Sending prayers and hugs.  Thanks so much for the update - know this has been difficult for you.  What Phase trial is this?

BTW, how the heck can the pharmaceutical company expect to find enough happy and optimistic patients who fit the rest of their criteria?  I'm happy and optimistic that you did.

Suzanne

sea60's picture
sea60
Posts: 2601
Joined: May 2010

to you Olga! Praying that your body responds in a positive way gaining health! You are such a beautiful lady inside and out and your strength is inspiring! Stay strong and THANK YOU for such a wonderful message from Chen :D

<3

Sylvia

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I'll be praying for you sweetie!  When did you break a rib?  Ouch!

HUGS, HUGS, & more HUGS!!!

Jamie

camul's picture
camul
Posts: 2079
Joined: Dec 2010

I was just reading about a trial using BKM 120.    I sure wish my insurance would recognize clinical trials.  Will continue to believe that you will have positive results with this trial.  Glad that your body allowed you 8 months with Xeloda.    Please keep us posted on how you do with this trial and am so glad that you are staying positive and hopeful.  Sometimes that is half the battle. 

Glad to hear that Claudia is doing better.  She too is quite the fighter. 

Hugs and prayers to you,

Carol

New Flower
Posts: 4046
Joined: Aug 2009

Thank you all for your encouraging comments prayers and good wishes. We all need cheering up, and I am not exception, especially when everything is uncertain.

more details about this :

http://www.clinicaltrials.gov/ct2/show?term=BKM120+breast+cancer&rank=6

Phase III Study of BKM120/Placebo With Fulvestrant in Postmenopausal Patients With Hormone Receptor Positive HER2-negative Locally Advanced or Metastatic Breast Cancer Refractory to Aromatase 

This drug is undergoing several clinical trials, including Her2 and Triple Negative, which are open and recruting at this time. You can check: http://www.clinicaltrials.gov

For Newbies and other survivors:

Please make sure to know where your breast and tumors are. Some day you might need them. I need to complement my medical team that deposit enough tissue to make 25 slides to this trial, and still have some left.

This is my #4 clinical trial study, however first three was easy diagnostic (biomarkers) and quility of life issues (ABC).

Very happy for Claudia. Praying she is turning the corner

Hoping to make to work tomorrow

Hugs

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

Dear New Flower,  I am hoping that this new treatment is not the placebo and is just the thing that works for you.Going through the screening successfully proves what an amazing warrior you are! Much love to you. xoxoxo Lynn

 

SIROD's picture
SIROD
Posts: 2180
Joined: Jun 2010

Dear New Flower,

Great and cheerful News on Claudia and I wish her a happy spring.  So, so happy for her.  Cool

For you:

Glad you have a plan and decision.  I wish that I was still using Faslodex.  When the right is having the shot, lean all your weight on the left side - relaxing the right side to hang loose.  Then exchange the position when the left is having the shot.  I found it worked for me and it truly isn't bad.  Don't look at the needles.  I only did once out of curiosity.  I talked to take my mind off me by asking the nurse how their dog, kitties, children were doing.  I knew my nurses well enough to ask questions like this an it was over in a blink of an eye.  

Good luck and best wishes on all these drugs.  Smile

Doris

SIROD's picture
SIROD
Posts: 2180
Joined: Jun 2010

New Flower,

I am so proud of you for trying the trial.  I am sending positive thoughts that you will be on the right side of 50%.  

A pioneer is how I think of you.

Best,

Doris

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

Dearest Olga,  this news results in such mixed feelings and none of it is easy.   I am praying and keeping you in my thoughts and wishing the best of the best in all of this, a truly positive outcome.   Such a scary road to be on and yet you are always so calm and composed, truly a model for us all.

Thanks also for the updates on Claudia, the last one of which sounded more positive.

hugs and much love to you

Mariam

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

Dearest Olga,  this news results in such mixed feelings and none of it is easy.   I am praying and keeping you in my thoughts and wishing the best of the best in all of this, a truly positive outcome.   Such a scary road to be on and yet you are always so calm and composed, truly a model for us all.

Thanks also for the updates on Claudia, the last one of which sounded more positive.

hugs and much love to you

Mariam

New Flower
Posts: 4046
Joined: Aug 2009

Thank you Ladies. The pain is subsiding. I am glad they gave me a heatting pad and I sit on it for 20 min after getting those shots.

next time I will relax more. 

I made to work today, however eventially has become very fatigue.

Hugs back

Olga

VickiSam's picture
VickiSam
Posts: 8292
Joined: Aug 2009

My heart, and soul go out to you and your family.  You are strong  WARRIOR engulf in another battle.  I truly wish you the best - You deserve a break from all that you've been thru my dear dear sweet Olga.

I am happy that you qualify for the Clinical trial - prayers that it works out for you dear Olga.

Gentle hugs, prayers and HOPE.

Vicki Sam

TraciInLA's picture
TraciInLA
Posts: 1848
Joined: Jul 2009

Дорогая Олга,

Oh, I just have to chuckle at that classified ad: "Looking for happy, optimistic, exercising people with metastatic breast cancer that has stopped responding to treatment."  Oh sure -- would you like fries with that?

I guess the question is: Are you still supposed to be happy and optimistic after all those tests and scans that, as you say, have been constant reminders that you're stage IV?  I can certainly understand why that would be an emotional ordeal for you, but am hoping and praying that it was worth it -- that this new regimen will be manageable and effective for you.

Big hug to you,

Traci

New Flower
Posts: 4046
Joined: Aug 2009

I am feeling better today. These Faslodex shots (they give you 2 on each side) treated me worse than I expected. In addition to bone and joit pain this treatment brought me back to the World of Hot Flashes and Waking up in the middle of the night. I geuss there is no such thing as easy treatment for cancer.

My favorite question from Quality of Life  Survey was: How would you rate your overall health during the past week? Hopefully at my next treatment which is scheduled on April 11 I will be ok on the scale from 1 to 7.

Hugs back

Olga

aysemari's picture
aysemari
Posts: 1590
Joined: Dec 2009

I would recommend to ignore statistics, if not defy them. I admire your knowledge, you are armed

to the gills with knowledge. And you always have a game plan. I really, really, really hope this new

treatment will work for you. You have been through so much already. It's thanks to brave women

like you that we have any treatment at all. Keep us posted throughout your highs and lows. You have

a rough road ahead no doubt, but you don't have to go it alone.

 

Hugs,

Ayse

Christmas Girl's picture
Christmas Girl
Posts: 3649
Joined: Apr 2009

Whether I'm posting here regularly, or not - you are always within my most hopeful thoughts & prayers. And will continue to be as you begin the next step.

Kind regards, Susan

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