Two Year Update

This topic contains 2 replies, has 3 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 6 months, 3 weeks ago.

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April 23, 2017 at 10:11 pm  #1290631    

scohn

Well, here we are – 2 years from the initial diagnosis. I just wanted to take this time to thank everyone at GRACE once more for all your caring and support. After 2 years of searching through and posting on GRACE I have come to deeply appreciate how much all of you put your hearts and minds into this endeavor. As the designated online information collector for my wife, your knowledge and your calm patience and warm thoughts have meant so very much to me. You helped me and my wife to ask questions we had never considered.

You have been there from the start. The initial phase when everything seemed scary and almost more than I was able to comprehend. The upsides when the chemotherapies and clinical trial drugs were working, and the downsides when the chemo maintenance and immunotherapy did not. And the current phase – where things seem stable and I am caught between the simultaneous fear of expecting and hoping for too much and expecting and hoping for too little.

As I have said before, we are blessed (if you can call anything about this a blessing) that so far almost everything we have had to deal with has been the side effects of the treatments & not the effects of the cancer itself. We wait for the latest CT scan info (due Wednesday) but at the moment it looks like the liver metastases are pretty much gone or under control, and the lung tumor is about 1/3 of its original volume and stable. At the same time we know the neuropathy effects of the clinical drug are likely cumulative, and the specter of the cancer breaking free from the constraints of the clinical drug seems to always hover nearby – but at least for the moment out of our way.

But my wife continues to have full energy, & as wonderful a disposition as always. She puts springtime into my heart every time she smiles and laughs. We look forward to our upcoming summer vacation and cherish each moment together. As the doctors help to heal her body, you at GRACE help to soothe and heal my heart.


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

April 24, 2017 at 10:28 am  #1290634    
catdander forum moderator
catdander forum moderator

Scohn,

You sure do have a way with expressing your thoughts. Thank you for the thoughtful words about Grace. I think you speak for so many, including most of whom stay in the shadows. Thank you for your contributions to Grace. You’ve provided patience, warmth and thoughtful, helpful information to many on Grace and I hope you know others appreciate it as well.

Best of luck this week I’ve got fingers crossed.
Janine

April 25, 2017 at 9:03 am  #1290642    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

Thank you so much for your kind words. As Janine stated, though a few of us are visible on the site, there are others working behind in the scenes, each of whom shares a deep commitment to Dr. West’s vision of providing authoritative cancer information to users around the world. If it can even be called a labor, it is certainly a labor of love.

I am certain that the information you share about how well your dear wife is doing provides comfort and hope to many GRACE users, and we hope to hear more good news from this latest scan, with many more positive updates to come.

Again, thank you for taking the time to express your thoughts, which we very much appreciate.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

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