Treatment stopped! What’s next?

I'm sorry to read this, this evil disease causes nothing but misery and chaos. My only thoughts are that there is always always HOPE. Always.

My innards have been scooped out over time :- left kidney gone, adrenal glands gone, liver resection, lung resection, tail of pancreas removed and spleen gone. A 2 Kg tumour destroyed my kidney and I never noticed it was present. This was between 2012 to 2017 and Im alive yet, and getting by.

Has surgery been at all mentioned? Regardless I am sending you my sincere best wishes and remember: this cancer is the enemy and you must treat the darned thing as if in a war. Give it no quarter, no surrender. Hope springs eternal.

All my thoughts are with you both. God bless you both.

MBB

Hi Billy 

Thank you for this message it’s very encouraging for us the last thing we want to do is lose hope but just when we think we are getting somewhere Cancer hammmers us again. Surgery has never been mentioned to us and I will certainly ask the team today why this is the case. 
Im so sorry you have such a rough journey you are obviously made of tough stuff

take care 

C

Yep, Cath, back in 2013 since most Renal cancers shrug a shoulder at chemo and radio, the only options were the now antique "Sunitinib" or surgery. I was very lucky E. McLarty, a former Guys Hospital Urology Surgeon (iirc) of extraordinary ability was at Derriford Hospital at the time. Surgery saved my life. No other treatment at all in 12 years.

Please do raise potential surgery with your team: it may have already been discussed but as you know  at times like these everything moves at superspeed, as if in a blur. Communication can be interrmittent. Processing all of this can confuse the behazus out of one.

My only useful advice is, to use a topical Presidential expression "Fight fight fight!" because it IS a war youre facing. No quarter should be given. This is my armament too: hope and a combatative positive attitude.

Secondly as an arbitrary aside --- Google is the WORST doctor on earth. Dont rely on any old data you find because theyre is almost worthless those papers from 2020, 2016 or even earlier. Dont go there. It can mislead you.

God bless you both. Keep fightin'! and sorry this post is too long.

MBB

Hi

You may not be aware, but there are a couple of groups on here for people with cancer that can't be cured, but the cancer is treatable.  This fits your husband's situation, exactly as you describe it.  

 Living with incurable cancer forum - patients only 

 Supporting someone with incurable cancer forum  

I'm in the first group.  We are a pragmatic bunch, live with our cancer as well as we are able, and there are many members past their sell-by date.   They can offer a different kind of support.  

Many with metastatic cancer have had good response from immunotherapy and new drugs are coming along all the time.  That's why we use "treatable" to describe our situation because people are getting an incurable diagnosis and then living for 10 years and more.   

I had an adverse reaction to my immunotherapy (ipilimumab and nivolumab).  Nothing as significant as your husband though.  It was stopped (May 2021).  After a low dose of steroids (30mg) for about 6-8 weeks and a taper, I was able to resume. I was desperate for my eGFR to return to a level appropriate for nivo again.  It was a very distraught time!   I stopped treatment in June 2024 with tumour shrunk and mets undetectable.   It takes time, especially when it dropped as low as your husbands.