Round two the Bad News
 

Hello,

Went to the oncologist today - PET Scan shows combo I'm on now was not working - no new tumors or spread elsewherer, but the ones I have are "busy" growing and gaining strength.

Set up an appointment for one week for chemo if I don't find anything better. I of course will be checking clinical trials, potential alternative treatments etc

Now begins the process of treatment choices again. At least the combo I was presented with where I am has increased in "success rate" according to most recent data collected.

Needless to say I will be very busy checking around the country at the "best" there is in regard to chemo and possibly other treatment methods that might prove to increase the odds of success.

I'm pretty sure all my "lists" I've accumulated are on my desktop computer in the "occupied" guest room, so it will be a challenge to find them.

However, I'm trying to stay positive and remind myself that I can still find a chemo that will work as well as the possiblity there may be a type of radiation therapy etc. that actually might help me more as none of those type of treatments are offered where I go now close to home

So, while I would have preferred good news, perhaps there is a reason for the timing.

One other good thing is that my company etc. is gone so I will have more time to catch up on how everyone else that posts here is doing!

Barb,

Not long ago, I was in contact with a clinical trial in Florida. They were recruiting people who have chest wall spread. I do not know if that means the chest wall lymph nodes. Let me double check and I'll get back to you.

Don't lose heart. Positive thinking boosts the release of endorphine and help fight cancer and all other illnesses.

ps. Here's the web address of the clinical trial I was thinking about:

http://www.clinicaltrials.gov/ct2/sh...celsion&rank=1

Barb - I'm sorry to hear this news and that you have to be on another search for treatment. I do know you are a great researcher and tenacious and will find the right match. Keep up your brave determination it serves you well. Sorry I don't have knowledge to add about trials, but I will be watching your posts to read of your next steps. Pam

Barb
I am sorry you got news you werent hoping for, but where one door closes, another will open, and I know you are knocking on many right now! The trial Jackie is referring to I believe is Celsion, as they contacted me....but they were looking for chest wall activity, not chest cavity...maybe our nodes are just "blooming" cuz its spring....that would be nice!!!
Keeping you close at heart and always in my prayers...the right treatment is there, its just finding it!

Barb, you're starting yet one more search for the chemo or treatment that will knock out those darn BC cells! I don't know why they haven't given up, they are dealing with the master!
I was sorry to hear your news that the current treatment isn't the right one, but so glad to hear you are working once more to find the good one for you.
I send you prayers and best wishes and many good thoughts for the days ahead. Luv, ma

Barb,

Your positive and fighting spirit is so inspiring! I pray that you will soon find the right treatment and vanquish the destructive cells.

God bless!
hugs,
shobha

Oh Barb,

This is so stressful. What combo does your doctor have in mind for you next?

I will continue to pray for you and I know you will find the next best thing to kick back those mets.

Love, Hope, Peace,
Carolyn

Regarding your petscan, please tell me what other tests you have had to prove this is true. A petscan shows rapid cell activity and this activity is sometimes repair, sometimes even taking a while to show positive results. I am just wondering, I do trust that the doctor must have other clues. Please do not lose faith and try to remain positive as hard is this is to do. If Ed was given the same news I would be asking for 'what other proof'? Again, I am not challenging your doctor, just saying....>>Believe51

PS: I see you have another post but did not read it yet as I have been busy with the death of my MIL and out of state company....I'll go peek now.

Was it a PET/CT that would show size increase? Are tumor markers relevant in your case?

Could investigate:

http://professional.cancerconsultant....aspx?id=43054

http://www.mbcnetwork.org/blog/?p=167

http://www.renalandurologynews.com/D...rticle/136212/

Since approved for renal cancer, maybe off-label use?

ASCO is coming up...

Barb,
Good news would certainly have been preferable...yet I appreciate your comment that there may be a reason for the timing. That happened to me once...the combo I was on at UCSF stopped working just as the DM1 trial was opening there.

Nevertheless, you have worked so hard in finding options - and been willing to travel so far - I really admire your determination. And I wish you had been able to enjoy a longer ride with a successful treatment.

Hang in there - you are right, there are lots of options out there.

Barb, Please know I am thinking of you and admire all of your efforts. Ceesun

Barb,

Sorry to hear about the treatment and I'm praying for a trail that will tackle the tumors.

Joan

Loving your positive attitude, and supporting you all the way.

Rebecca

Round two the Bad News
 

I am sorry to read your news, but I want to offer my encouragement. Keep putting one foot in front of the other and keep searching for a good fit.

Barb, stay positive I am sure you will find something. There are many, many options out there and more everyday.

sorry to hear this! sending lots of prayers that you find the perfect combo soon!

In your corner always, Barb. Love and hugs to you!

I stopped in because I've had a rough day - and will be back tomorrow.

I update you on info and be checking on the info provided.

Thanks for the positive words and the help.

My thoughts and prayers are with you, Barb. You hang in there!

The drug they are proposing up here is Ixempra (Ixabepilone) and back on Herceptin.

The problem was that 4 months ago the odds of it working were only 10%, then when I went to see another onc in Chicago it was up to about 18%, well, now it is about 28% (last Thursday)based on the most recent data. This is based on my condition - new mets developed.

So, my thinking is I should get going on it and then keep looking around. I do not want to wait too long and let them get too big. The original lung met is "very" active as well as grown more than it ever has before and I would prefer to halt them ASAP.

So, I still have an appointment to get the treatment Thursday and I'm busy checking what is. Also, many of the clinical trials stated you couldn't try them if you had "exhausted" all other treatments, had brain mets (which aren't gone but are shrinking" etc.

I will be checking at the other places and I already have a couple places to fax info on my last scan.

Just hopin' for the best to cross my life path!