New forum member from the Twin Cities in Minnesota. - 1261868

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karenb
Hi Tom,

Hi Tom,

I am so new to Nivolumab that I am not in the position to answer these questions. I wish you would go ask at Inspire.com to the Nivolumab Club Members as some have been on it for years.

As of now, I don't have any restrictions. I had my1st infusion last Tuesday and have no symptoms so far. Did have a incident last night of Tachycardia but I had let myself get dehydrated and my potassium too low from my previous chemo. Feeling great again tonight. Wish I could be more help but will prayer for Lucy & you to find something to keep her stable.

Karen

catdander
Tom, I'm so sorry to hear

Tom, I'm so sorry to hear that Lucy and you have these decisions to make so early on nivo. Too I'm especially sorry we weren't able to get to you sooner. Mark is working on a problem that's making the site unstable...sorry about not being there. Did you find any support on inspire. Please let us know what decisions have been made. Keeping up hope. Love and hugs, Janine

catdander
None of those 3 specific

None of those 3 specific issues have particulars to nivo or not as yet.
I hope she's well enough to give it a better try but the balance of quality and quantity is beyond difficult...desperate.

shy one
Dear Tom, I'm worried that

Dear Tom, I'm worried that you haven't posted in 5 days, and hope that things have taken a turn for the better. Catdander is right, balancing quality and quantity of life is beyond difficult. I'm trying to do the same thing right now, hospice vs. more side effects from treatment. I just want to remind you that the decision if Lucy's, and you might ask her how hard she wants you to advocate for one or the other, or if she sees another option. My heart goes out to you both.
Nan

phillydaughter
Tom,

Tom,
Sometimes i am at a loss for words. Please know that lucy and you r in my thoughts and prayers. Although i am not a catholic any more, i will be attempting to bike into Philly tomorrow and u can b sure i will be adding you, all patients, caregivers and healthcare workers to the prayer requests left at the cathedral.
We are all part of one "family".
Love and peace
From philly

biggerten
Lucy is home, on hospice care

Lucy is home, on hospice care. I am not at all sure of where this is going. We have a hard time keeping her oxygen level stable, she has periods of dyspnea which are very distressing to us all.

I have cut my hours at work to half time to be home as much as possible.

To be frank, I've not posted because I'm just depressed.

shy one
It's no wonder that you are

It's no wonder that you are sad, Tom, and grieving, too. Can you talk to someone at hospice about your feelings? They have counselors experienced at what you are going through, and, more importantly, experienced at listening. I wish I could offer words of wisdom, but all I have for you are tears of compassion.
Nan

JimC
Tom,

Tom,

As Nan said, I don't have any words of wisdom, but wishes for comfort and peace for both Lucy and you. We well keep both of you in your thoughts.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

biggerten
The oncologist is concerned

The oncologist is concerned about further treatment, but I don't think dead set against it. We are going to see about it this week.

I think the main points are Lucy's status, three or four, and the fact she is on 8mg dexamethasone, which I think corresponds to about 50mg predisone. I don't know if this level is a complete no-no while on Nivolumab or not.

Dr West
Tom,

Tom,

I'm so sorry to hear about Lucy's recent issues. It's important to know that nivolumab is new, so there just isn't a lot of experience with it. Patients with a performance status of 3-4 were not included on trials, nor were patients requiring steroids. Decadron (dexamethasone) at 8 mg (once or twice per day) is a medium dose that may be immunosuppressive enough to limit the activity of a treatment being given to stimulate the immune system. Oxygen requirements aren't a clear reason not to treat with immunotherapy, but worsening breathing difficulties are a concern as a side effect (though rare) that would only make it harder to continue with it if breathing remained tenuous.

Overall, you could decide to give it a try in hopes of a dramatic turnaround, but these issues would have made Lucy ineligible for immunotherapy according to the trials. Unfortunately, a dramatic, rapid reversal with nivolumab is not common, and it would be even less so in someone who requires steroids and therefore has a suppressive effect on immune function that the nivolumab is trying to stimulate.

If she's at a point where she really can't come into the clinic on her own power, that's really not a setting where nivolumab has a place as a treatment.

Thinking of you.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

biggerten
Thanks one and all for

Thanks one and all for everything these last couple years.

Lucy is at peace 12:35 am CDT, October 1, 2015.

I'll never understand why God needed Lucy more than I did.

dbrock
dbrock's picture
I am so sorry Tom. There is

I am so sorry Tom. There is never any sense to be made with any of this. Rest in peace, Lucy. And Tom - take care of yourself. You always have friends here who are thinking of you.
Many hugs -
Denise

Visit my bio here.

phillydaughter
Tom,

Tom,
I am so very sorry to hear of Lucy's passing. Please know that my prayers are with you as you transition through this difficult time ahead. I will never understand either. You fought ceaselessly for her. Now let her be your angel.
I can not thank you enough for all the help you have given to me on this site.
I was at the pope's visit on Sunday The love, kindness and fellowship there I will always remember - no matter what faith everyone came together. I feel that about the people here.
God bless.
Michelle

JimC
Tom,

Tom,

I am so sorry that lung cancer has taken your beloved Lucy from you. I wish you peace and comfort, and in time the ability to remember not her battle with this disease and her passing, but all the wonderful years you shared. As Denise said, please know that you have many friends here thinking of you.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
Dear Tom, I'm so very sorry

Dear Tom, I'm so very sorry that Lucy has passed. I know you're glad that she is no longer suffering but I also know the helplessness and longing in you sadness. I am thinking of you and keeping you close in my thoughts and hopes.
Many hugs,
Janine

shy one
Oh, Tom, my heart weeps for

Oh, Tom, my heart weeps for you and Lucy, and for the love you shared. Please know that you have been special to all of us here on GRACE, and that we have traveled your and Lucy's road more easily, thanks to your efforts and posts here.
Nan

catdander
Nan it right Tom. You have

Nan it right Tom. You have been so supportive to so many here. Your input has been so important to many.

sawcmw
Just to follow up with Tom's

Just to follow up with Tom's updates on the approval of Keytruda for adeno NSCLC, the FDA approval came today with the caveat that approved for use with a companion diagnostic PDL-1 expression test . However, I don't see where it mentions the level of expression required.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm465444.htm

Steven Weaver

biggerten
Yes, I am aware, it comes one

Yes, I am aware, it comes one day after Lucy's passing. A bitter pill, after we were hoping for so much. I hope many others are helped, Lucy just couldn't hang on.

sawcmw
Tom, I can understand the

Tom, I can understand the bitter pill and I am so sorry for your loss. Unfortunately, my wife is currently in the hospital with a variety of problems that has made her to weak to receive any cancer treatments at this time. Hopefully, we can resolve these issues and at least try to get the PDL-1 test.

Steve

Steven Weaver

biggerten
Steve, I hope and pray so

Steve, I hope and pray so much that you and your wife get the chance we weren't granted.

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