Re: Irene From Tampa
 

Amen, again John.

Re: Irene From Tampa
 

John -
Know that we feel your pain seeing Irene's disease come back on her so quickly. It is a shock after she had responded so well to the T-DM1.

It is exactly for people like Irene that our group has been asking Genentech to release it for Compassionate Use.

Clinical trials are run to uncover all kinds of information. The billirubin elevation may or may not be very meaningful, but the trial managers made the decision to withhold.

Joe of this web site may know who you could try to speak with at Genentech to restore Irene's treatment. You have my prayers that the previous decision will be changed.

Re: Irene From Tampa
 

It would seem that there is need to augment the clinical trial practice with some new process for refractory patients that no longer respond in accordance with sponsor and FDA agreed test evaluation criteria and for whom no alternative, potentially efficacious treatment is at hand, which in so many instances is the case.
And yes, that new process should definitely include option to continue receiving original drug(s) used by ongoing clinical assessment.
Not only is it possible, even probable that patients assigned to and treated in this new setting will reap more benefit from this service than being outright excluded from it, but they also continue to provide science with further data about drug’s performance when re-administered after some period of discontinuation.

Re: Irene From Tampa
 

Conversations took place yesterday regards Irene's circumstance and the ready access to TDM1. As already mentioned / posted in this forum, such access isnt currently available.

There may be issues with the drug - although its agreed that the drug does work in many people in their fight against a terminal disease.

As mentioned to the Genetech representative, their stated search is a CURE for cancer - in its many varieties & complexities - one, two at a time. These trials are many and well founded, providing the statiscal basis on which "cure" is processed and offered - however, one stastistic should be unavoidable in their considerations - zero.

Irene Fernandez had double-digit tumors reduced to zero.

TDM1 may be the cure for Irene Fernandez.
TDM1 may be the cure for many of others at this forum.
TDM1 may not be a perfect drug yet - that process continues in good faith - but it worked "as is" now
on Irene. Unlike any chemotherapy taken previously - and over a 14-15 year period there have been many - TDM1 made her tumors both shrink and disappear.

Liver toxicity levels are a concern - but when compared to the ravages cancer will undoubtedly impose on her body - its a minor challenge. Irene's faced larger mountains with a strong heart.

Its a risk worth taking - its a risk she's been willing to take for many months, but her voice went unheard - unheeded.

In the complex healthcare field, Irene needs a partner of similar strength & conviction as she.

Irene lives in an absolute world.
Perhaps others on this forum - most certainly in the country share her circumstance.

There are no greys - its fairly black & white.
Maybes dont exist - its yes or no.
Good intentions..a well placed heart - dont count.

After a long and hard search - a battle to stay alive until such a cure could be discovered - TDM1 was found. This may be it for Irene. In every sense of the phrase.

Irene's (our) plea isnt made for "good intentions"...
Its not a search for calm in a difficult time...
Its not an effort to leave no stone unturned...
Its a desparate / first clenching grab for life.

Adminstrative concerns wont change the nature of this moment. A long clerical/medical "to do" list cant prevent action. An expression of concern - although accepted as heartfelt - wont suffice.

Action is needed.
Bold, creative, motivated action is whats necessary.

I believe Genetech is capable of these things - if they have the will.

I believe Genetech is capable these things - if they mirror Irene's strength.

I believe Genetech can cure Irene's cancer.

I believe thats their stated goal.

The time is RIGHT NOW.

Re: Irene From Tampa
 

John, I so agree that the "drug dealers" working to "find the cure" must have the level and depth of courage that Irene and so many others express daily. Line up the lawyers ready to have the "you're not responsible" papers signed....But give them the drugs! I'm prayin' for your miracle! ma

Re: Irene From Tampa
 

I am so sorry to hear this, John. Peace and love to you and Irene. xo Suzan

Re: Irene From Tampa
 

John, can you find out who is in charge of herceptin-TM1 at Genentech and have Irene's oncologist contact them directly? Could he put a human face on the situation and ask as one human to another if there is not a way Irene could give up all rights to sue and continue to receive the drug?

I have met the persons responsible for herceptin @ Genentech (she left soon after it was approved), lapatinib @ GSK( he left around the time it was approved) and knew the son of the woman in charge of rituximab development and trials @ IDEC (who was willing to ask her questions on my behalf). All were very considerate human beings. They must get these types of questions all the time, but not often with a face on them. Perhaps your doctor could arrange a video conference call if he/she does not get an emphatic no to his/her plea.

Just thinking out "loud"


Hope some of this helps!

Re: Irene From Tampa
 

Friends..

I posted an update at Caring Bridge regarding Irene. I dont have the strength to repeat it.

Please be well - John

Re: Irene From Tampa
 

Here is John's post on Caringbridge:

Dearest Family...
Dearest Friends...
Dearest Loved Ones...

I'm heartbroken to bear you this news...but Irene's battle is over.

Dr. George met with Irene, myself and the girls this afternoon...to graciously and with dignity let us know the war couldnt go on.

Irene's liver simply is no longer up to the task.
He recommended discontinuing care.

We're uncertain...actually doubt...if Irene understood the import of Dr. Georges words. She showed no reaction.

So...its over.

In recent times I'd been told that Irene & I had done just about everything that possibly could have been done in this long engagement. I know Irene had...and I struggled to mirror that effort in her abscence. I didnt want any stone left unturned...any possibility left unexplored. In the end, we simply ran out of stones.

In coming days we'll explore ways of bringing Irene back home...back to our home...where she belongs and where will always be part of. I want her care to be dignified and loving. She deserves nothing less - much, much more.

Two things please........

In recent days Irene was searching for the words to some prayer....and had the phrase "Jesus stay with me..." in her mind...but couldnt construct or recall the remainder.
Does anyone know if this truly is part of a prayer? I do not. If so, please be so kind to let me know.

Also - Friday will be Irene's 64th birthday. Come. Be with her. Please.

I do have to go...my heart is out of words.
Please be well and please go well.


Love to all - John


John, I have no words - only continued prayers. I don't know the specific prayer Irene is seeking - Jesus stay with me - but I do know that it will be so.

Please give Irene my love,
Chris

Re: Irene From Tampa
 

I am so tired of bad news while drugs that can make a difference are not made available...even as a last effort.
Tired, sad and feeling like we are all just waiting our turn. Words cannot express...............

Re: Irene From Tampa
 

So sad to hear. Why does this have to go on? When will it end? Irene is such an inspiration and she deserves so many more birthdays...

You are in my thoughts and prayers. Praying for a miracle.

Love, Hope, Peace, Carolyn

Re: Irene From Tampa
 

Shedding tears of sadness as I read this post. It's just so damn unfair......I'm getting ticked off about our sisters and brothers dying of this cancer and having to fight to get the treatment they need and deserve.

Irene is a true warrior. John, wishing you all strength during this very difficult time.

Re: Irene From Tampa
 

John this news just breaks my heart. What a fighter & "true" inspriation Irene has always been to me. I'm so sad and angry at the same time. Irene has always been one of the strongest women on this board, & I really believed she would pull through this. Sending all my love to Irene. I will continue to keep all of you in my thoughts & prayers.

Chelee

Re: Irene From Tampa
 

Oh John. I am just numb. I am so sorry. I'm glad you will help her leave this world in a dignified, loving way. Just 64. This disease STINKS! Please tell her she is surrounded with love. Tell her she brought wisdom and beauty and love to our community and that the essence of her will live on through us, through those she inspired.

Love

Jacqueline

Re: Irene From Tampa
 

I'm staring at this screen numb with this latest news. Words don't come only feelings. I'm trying to imagine Irene blanketed in dignity grace and love.

Re: Irene From Tampa
 

This news of Irene flattens the spirit and challenges the hope of better tomorrows. I know they are working hard to find the answers, but to know one is right and available to some is so hard when it is denied to the most desperate. Love to Irene and John and the family. ma

Re: Irene From Tampa
 

Dear John -
To borrow a phrase from American statesman Thomas Paine, "These are the times that try men's souls."
Not only men, but women and children are tried.

Our souls ache for Irene and all her dear, steadfast family and friends. She has had a long, very positive connection with many of us on this board.

I hope someone will come up with the rest of that prayer. It seems that Irene has been closer to her maker in recent days.

Re: Irene From Tampa
 

I found this online...my heart is heavy and I'm sending prayers to Irene, you and her family and friends.




Sam Cooke, Be with me Jesus Lyrics

Oh Lord, the time is growing high
When I must breathe my last breath inside
Lord, in my dying hour, stay with me, Lord

Oh Lord, my friends have gathered ‘round
They’re watching me slowly, slowly sinking down
Lord, in my dying hour, stay with me, Lord

Now Lord, now Lord, now Jesus time have come
When I’m a leave my earthly home
Friends standing around, tear in the eyes

They know that I am about to die
But I’m not worried, I’m not afraid
I know you do, Jesus, just what You say

You be with me Lord, day and night
I’m not afraid, I said I’m dying, don’t leave me now

Oh Lord, I know you’ll stand by me
When I’m in trouble, when I’m in misery
And Lord, in my dying hour, stay with me, Lord

Oh Lord, I know You’ll stand by your word
Whenever I call You, I know You have already heard
Lord, in my dying hour, stay with me Lord

Now Lord, I said farewell, fare thee well
Fare thee well to my friends down here
I’ve got loved ones waiting for me up there

Oh Lord, others are waiting for me
What a reunion, I know that will be
Lord, in my dying hour, stay with me, Lord

Re: Irene From Tampa
 

I've been posting on Irene's caringbridge page...and like John find it too much to post in both places.

Irene has always been my inspiration, and will always be.

I so admire how one moment she would feel herself running out of options then the next would find her squeaking through a partly open window - and running full force again, sometimes for a long time.

Irene told me once that she sometimes hesitated to post because she hadn't been "cured" and didn't want to scare people. Yet although cancer is scary, Irene is the antithesis -always bold, heroic (although I doubt she would call herself that) and full of both passion for life and compassion for all she came in contact with.

Re: Irene From Tampa
 

These are such sad days. Irene is such an inspiring and uplifting person. I'm sure that TDM-1 would have given her more quality time, and I have trouble dealing with the rules that still do not allow it to be released for compassionate use. My thoughts continue to be with John and Irene and their extended families.
Best,
Barbara H.