Log in or Register to participate in these discussions

Immuno Therapy Running Amok and the Caregiver in the Dark

Immuno Therapy Running Amok and the Caregiver in the Dark

Posted by CharlotteS on Jun 5, 2020 6:46 pm

My wonderful silly man who was diagnosed with Renal Carcinoma August 2018 was placed on an Immuno Therapy Trial.  His first 4 cycles were on Opdivo and Yervoy.  Within 4 months his Thyroid had ceased to function and it took over a year with an Endocrinologist to finally get the Hormone replacement to balance out his system.  During this time, he has been on the Opdivo only.  Blood tests every week and the tumor has shrunk in size. Yay. Recently he has been experiencing some weird reactions.  Dry skin has always a problem for him but this was raw.  Headache and then double vision.  Dry mouth, red tongue and then the thirst hit. He has his infusion biweekly and his blood showed his glucose was elevated...slightly.  He went into the Cancer Lab for his infusion on Wednesday and all Hell broke loose. Unbeknownst to me (I was waiting in the truck in the parking lot for 7 hours trying to get answers) my husband had been sent into Emerg in a state of Ketoasidosis. My daughter called the Hospital and was transferred to ICU.  I knew something was dire but could not get an answer out of anyone. Nor could she.  I'll cut to the chase of this long story.  Things are different under Covid Rule so I did not want to upset the applecart.  Well it turns out that the Admitting Doctor is no longer.  It is a Hospital List.  That Doctor can not and will not call family unless the patient asks.  My husband thought I was being kept up to date. After 3 days of me wringing my hands I may see my man home by tomorrow.  He will be on Insulin the rest of his life.  It will be hard to get him to give up chocolate.  So I guess the morale of this story is...Do Not Assume. Keep knocking on doors until you get an answer. Even our Family Doctor and the Endocrinologist were unaware this had happened. Having said all that, I want to say that I think these Health Care Workers are Angles here on Earth.  Thank you one and all. Bureaucracy sometimes gets in the way.

Re: Immuno Therapy Running Amok and the Caregiver in the Dark

Posted by Kims1961 on Jun 5, 2020 7:57 pm

CharlotteS‍ So sorry you have had this difficult experience on top of the cancer treatments!  I can't even imagine waiting for 7 hours and being left in the dark.  I'm glad your daughter called.  

COVID has added some additional stressors on all of us - medical staff, patients and definitely family members.  I usually attend my husband's medical appt. for his kidney disease, but not that this not possible with COVID. He tries to remember the directions given by the doctors,  but it all becomes a whirl of info. sometimes.

Thank you for posting.  Good reminder - to keep advocating and keep knocking!  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Immuno Therapy Running Amok and the Caregiver in the Dark

Posted by Cynthia Mac on Jun 6, 2020 8:15 am

CharlotteS‍ , I’m sorry to hear about your husband’s experience — and yours!

My gosh, if I’d waited for Dad to ask someone to call me when he went into hospital almost 2 weeks ago, I might still be waiting!

As Kims1961‍ , Everyone is under added pressure due to his blasted pandemic, and while we don’t want to rock the boat, as you say, sometimes it’s just a plain necessity. 

I hope you have your hubby home soon, and that it isn’t too much of a challenge to make the necessary lifestyle changes for him.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Immuno Therapy Running Amok and the Caregiver in the Dark

Posted by CharlotteS on Jun 6, 2020 12:24 pm

Thank you ladies for responding to my vent.  I received a call from the Doctor last evening.  Apologies and the admission that he had fallen through the cracks.  They were busy trying to save my man.  For that I am so grateful.  Our lives will be forever changed now that he has Type 1 Diabetes. I still can't see him in person but we can talk back and forth on our cell phones. He can do the nightie dance in the window of ICU for me.  As far as I know they will keep him on the Immuno Therapy but he will be on Insulin with every meal and a shot at bedtime.  Diet will change.  Broccoli Pie instead of Apple Pie.  Whatever works. I hope to bring him home next week. Thanks for being here on this site.