Today Linda got the news she didn't want...the Tarceva has done nothing to help her...the nodules in the lung have increased in size....a nodule is on one of her adrenal glands.....progression of bone metastases....some affected lymph nodes in the abdomen....the verbage to describe it is much more extensive but this describes things in as simple terms as possible...
What now??????
We are weathering the shock, disappointment and depression....and moving on...so NO pity from the "peanut gallery".....we are moving on to "next steps".....this attitude has carried us this far and has made Linda an amazing model for others...read yesterday's New England Journal article again if more understanding is necessary.
The Oncologist said Linda may qualify for a Clinical Trial.....something not available in Bend...so a good move we made to Portland....he had his person who handles Clinical Trials meet with us and describe the two trials Linda might qualify for....the details of each are extensive so we won't review them here but to say.....Clinical Trials are "trials"...involving the targeting of therapy to a specific mutation..is what is causing the cancer in the DNA....at this point the doctors and scientists are not ready to say "this is it"..more study and trials are needed....but it creates a real chance if Linda...has the mutation...is accepted to the trial...and responds to the therapy....big "ifs" we know....
Now Linda will need to do another biopsy as the original biopsy determined she had cancer and what type but not enough specimen to determine mutations etc...if there had been enough, the doctors would have known ahead of time if the Tarceva was going to be effective. The biopsy may be done next week and once the DNA mutations are determined, the right "trial" will be selected and application made.
The alternative...there are more chemos that can be used....to slow the growth of the cancer...and affecting the rest of the body with side effects...the nasty sort of thing Linda went through earlier in her treatments.
Linda is determined...we both are..and we are committed to lead a quality life....and to do whatever it takes to slow this cancer down or better yet...beat it...still a long shot but possible....so send good energy.....no pity stuff.....
We are sitting in the woods in Chehalis Washington waiting for the kids to show up tomorrow night....camping for the weekend...then back to Oregon to finish up stuff on the house and getting our furniture next weekend....we want Linda to be able to "kick back" and enjoy her new home...if anyone is in the Bend area next Saturday afternoon and wants to help load furniture..call....or in the Canby are on Sunday afternoon to unload the furniture...Son Jim is on board so we are on our way...
This is what we know to this point..a lot of info without going into great technical detail..more later...
Thursday, September 2, 2010
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9 comments:
Okay! So, let's get started with those clinical trials! Best case, it slows and beats the cancer; worst case, you help others find a cure. Both pretty positive scenarios, when you really think about it.
I wish the news had been different, but it wasn't, so let's move on and get to the next thing. Good luck getting your furniture in order. And have fun camping!! Always have fun, no matter what.
My love to you both, as always.
It was great to talk to you... I love you so much. I have never known anyone as strong as you. You are my HERO!
I am so thankful for you.
I love you!
Julie
Not totally unexpected so I'm ready to move on with you. There are still things to be done, with treatments, with your house, and with your life. Once the dust (this great pile of information and scattering of choices) settles, you'll be good and strong as always. Love to you both,
Marjorie
Strong energy thoughts from Florida!! This disease
has to be beat! I vote you are the one to beat it!! Egypt is waiting for you! Kay
I keep remembering a fellow's comment re: cancer and diagnosis -- that it wasn't as if he didn't have the cancer the moment before he heard the diagnosis and then had it afterward -- that truly nothing had changed from the moment before hearing to the moment after. So. You were moving forward and improving, healing before the medical news -- and you are still moving forward and healing now. Take a deep breath; grab a nearby hand; lean on a shoulder; if necessary, cry some tears of frustration and anger and sorrow (don't leave those feelings bottled up inside; that does no good) and let's keep on with this. ... Yea, though I walk through the valley of the shadow of death, I will fear no evil. For thou art with me.
We're here, L. Always. Turn your face to the sun and let its warmth fill you up and renew your spirit.
Wrapping you in the golden glow of healing love and peace!!!
Susie
Positive engergy sent your way. Linda, we got that cold weather here that you sent us from Oregon. Nice change, but drastic. I 've been wating for cooler weather to shampoo carpets....get I have to get busy!
Enjoy your weekend.
Marilyn
Linda & Dave;
I'm sorry that the news is not good. Hopefully, there are some avenues yet to try. I want to caution you to check to make sure that participating in a clinical trial will not (and get it in writing) jeopardize continued coverage of your health insurance.
Had Skip participated in a clinical trial, his health insurance would have paid nothing further for anything connected with his cancer.
Enjoy the camping. It is in the 60s here today and folks going to the first Nebraska football game tonight are worried about getting too cold.
Love & prayers,
Ruth Ann
Enjoy the peacefulness of the woods--no pun intended--and your family. Thinking of you.
Nancy
Dear Linda & Dave-
In a round-about-way, thank you! I just came home from work to what “I thought” was a terrible week – made myself a cocktail and then sat down at the computer to catch up on things – then read your blog. So now I know my week was actually great! Thanks again for that, you both are such an inspiration!
I ditto all the wonderful things your other friends have written regarding this latest post, and that too says something about you – such wonderful people you know that love you so dearly. I strongly agree with Kay from Florida that “you are the one to beat it”, you both are such strong and positive people – it’s truly a joy knowing you.
Okay, now I agree with Dave, it’s time to kick back and enjoy your new home! But before doing that, you better have lots of fun with the kids this weekend camping… and I’m sorry I can’t help you with moving – I’m sure you know I would if I could!
Missing the movies, popcorn and of course the desert that Dave and Steve always make you make; yes, I love them too, but I know you realize that!
All my love and best wishes,
Mike P. in Florida
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