I'm so sorry to hear of your husband's struggles. I hope that the adjustment in his medications will help, and that the meeting with his doctor will result in a good, effective plan going forward. We will keep both of you in our thoughts.
<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>
I'm glad you're checking in but it sounds as though life is getting tougher again. I'm so sorry. There are so many moving parts to manage for his well being. Is there a person such as a palliative care professional that acts as the point person for all the facets of treatment? Some cancer centers have palliative care departments with doctors who specialize in managing the whole person during life with cancer. I've only read about them, Don's cancer center didn't have this service available. I hope the new drug helps you husband and I hope you are allowing for your own stress management.
I'm keeping you and him in my thoughts.
Thanks so much Jim and Janine. Yes Janine we have palliative care onboard. In fact they are the team which changed his antidepressant med. Last visit for infusion, we spoke with our oncologist's nurse for about 40 min, then the hospital soc worker for about the same time, followed by 3 palliative care Drs who asked a lot of questions and spent about 20 min. It was quite the busy visit, but everyone was concerned about his mental state. It's been a long road, both the nurse and soc worker explained about the dilemma they are having with folks in limbo like hubby, who were prepared for the end, but however immunotherapy has now extended things and they are trying to figure out the best way to counsel these folks. Obviously a good problem to have though.
Will update again after next scans.
You've brought up such a good point. A good problem to have but it's no walk in the park to outlive cancer that was supposed to kill you. Spouses like us have a front row seat. We watched our husband's prepare for the end. I can't imagine what that's like. So how do you pull back from the abyss to join life again? A high class problem but a problem none the less. It's good to know palliative care teams have recognized the issue.
I don't know if you've read my tagline bio but my husband wasn't supposed to outlive this but it looks like he has. Obviously we couldn't be more surprised or lucky but it's taken all this time to find some footing in this world where he can't practice his life's skills as a cabinet maker and shop owner.
It sounds like y'all have a good team around you. That's great. Hugs all around.
Good morning, today brings more confusing reports of stable disease which does not match decline in hubby. If keytruda is continuing to work, why is he losing so much weight and muscle and getting weaker? At times so much weaker that his legs are barely working, also started with urine issues of frequent and urgent episodes. Seeing Dr later afternoon and will hopefully get some answers. Tough road
As a moderator I'd would say it's not so unusual for people who are being or have been treated for cancer sustain lots of injury to the body so other new problems aren't wholey unexpected. Along those lines being sick is often enough to lose your appetite.
Now for my take as the wife of an already thin man whose never have any extra appetite who has been ravaged by a pancoast tumor, surgery, radiation, lots of chemo, and loss of his profession. It's been a devastating process to watch not to mention what it must be like for him. But he's still plugging along and we're both thrilled that he's still here and living life. He went in for his last 6 month CT (down from every three months) with the intent of moving to yearly when he had a bleb that partially collapsed the lung then pneumonia in the other lung he's back on every 3 months. Wow, that was a rant.
No matter what cancer is going to drastically change ones life. Having to deal with other medical problems is part of the new norm. Many people end up seeing specialists for none cancer specific problems.
Don still goes through boughts of not being able to eat enough and megase has always helps get back on track. I know Don worries about all these problems possibly being cancer coming back, I don't think there's any way to get around that worry.
I hope things get better and thanks for letting me vent while we are in the middle of a scare.
Thanks so much for responding Janine, what a crazy scare there, so glad it was not cancer back.
Hard the hard tough talk with oncologist, she feels Ed is done with keytruda, that it's not really helping him anymore. He had #13 today, we will have some discussions and most likely go back into hospice soon. She feels hes nearing the end of the road and it's time.
Regarding how can his scans be relatively good but he's declined is because sometimes cancer doesn't raise a red flag in scans with some new explosion of tumors. Sometimes it raises little white flags for a while which all add up to something bigger.
Still trying to process it all, we've been here before on hospice last summer. He's had an extended time of nearly a year, Dr says that's really rare.
As a side note, hubbys developed plaque psoriasis from keytruda, its spreading pretty quickly a lot on his back, now to small spots on arms, legs and even fingers and fingernails. Ugh.
Onto the next phase. Thanks for listening.
I am so sorry to hear this news. It sounds at the very least that perhaps Ed needs a treatment break, so hospice seems to be a good choice. As you already know, at hospice he will receive the care he needs for his symptoms, and hopefully that will make him much more comfortable. If he should regain strength, it is always possible to re-evaluate the hospice decision.
Our thoughts are with you at this difficult time.
Cheryl, I'm am so sorry Ed is moving back to hospice. I hope they are able to relieve him of these symptoms. It's really not fair that I compared Don to Ed when clearly our hopes for the best are very different today plus I've never had to face what I'd feared the most; to know when it's time to stop treatment and move to comfort care. My imagination is full though and I'm so impressed with your strength and glad that Ed has the chance to heal a bit from treatment. Like Jim suggested, today there's the possibility of reeval later.
Cheryl and Ed you are in my thoughts and hopes for comfort on your tough tough road.
Here's to hoping tomorrow is better than today.
3 weeks on hospice as of today. Hubby is getting weaker, barely eating one snack a day. They don't prepare you very well for this phase, there should be a class hospice 101 for caregivers. So many items in the house now, equipment and supplies. Was prepared for decline physically but was not prepared for the bathroom issues. Finally getting things under control though. Certainly taking things one day at a time.
Oh Cheryl, I'm so sorry. I know you're right about being prepared for Ed's physical decline. I'm glad things are getting under control, one day at a time. I'm sending strength and hopeful thoughts your way. Janine
Update, my wonderful husband won his battle over esophageal cancer last week on Aug 1, 2017. Keytruda helped keep things at bay for a short while but then things went down hill quickly. He fought for 28 months, a long and hard battle. http://csnh.tributes.com/obituary/show/Edward-Field-105067802
Thanks to everyone on this site who followed Ed's joinery and helped with my questions along the way. Missing him tons.
I am so sorry to hear of the loss of your dear husband Ed. Thank you for sharing the link to his obituary; it paints a clear picture of the wonderful man with whom you shared so much love and joy. He truly did fight courageously, aided by your steadfast support.
I'm glad that you have a large, loving family to support you at this difficult time. Please know that all of us here in your GRACE family are holding you in our thoughts, with wishes for peace and comfort.