Immunotherapy problem.

Hi Mama, I am in exactly the same position as your husband.

I've had 'significant shrinkage of main tumour (also in right lung) Also called 'partial response ' which i initially thought wasn't a good phrase but turns out its good.

There's:

Full Response, 

Partial Response,

Stabel 

Disease Progression.

So, I'll take Partial Response

Regards immunotherapy, also like your husband I've had a few rounds of pembromizulab, methotrexate and carboplatin.

All was good for the first 3 rounds and then the immunotherapy decided to play around with my liver and my thyroid, so I was put on very high steroids for 3 weeks while they got my levels back to normal.

I also always feel as if I'm living on a knifes edge and I worry that immunotherapy  will be taken off the table if it continues to affect my liver each time.

The Oncologists have to tread a fine line. The way I understand it is, side effects can, in some cases, indicate a good response, but it's a matter of dampening things down with steroids, in preparation for the next onslaught!

When I was on steroids I basically ate healrhy, plain low cal food for a month as I was terrified of putting on weight (shallow that i am). So im hoping I  don't need to go on them again.

I I find anything out. I will let you know.  It sounds as if we have similar worries. X

The crazy thing is, I'm the fittest I've ever been. I eat healthily, loads of fruit and veg, adequate protein.  I don't drink or smoke have loads of energy etc So it seems unfair that my liver isn't playing ball and could potentially spoil things for me.

Ps I don't think they would just stop all treatment just because one thing isnt working,   I'd like to think they'll try something else - especially if the person is otherwise fit and strong. 

Is a question I need to ask them.

Thankyou so much for your reply .

my partner is the exactly the same ,he’s at his best eating really well gaining weight .,he again is worried about gaining weight from the steroids .

He as never ever been Poorly before he said his bubble feels burst now .

I’m trying to keep him positive can I ask if you have been offered any radiotherapy ? 

Our oncologist is going to request his scan is looked at with a view to some radiotherapy .

Again like yourself just wishing the liver can continue to improve 

please keep in touch 

Yes I've had 6 lots of radiotherapy. right at the begining. I can't recommend it highly enough. 

Its not at all painful to have done, but can sometimes cause a flare of pain the first week. But it soon settles.

Thankyou 

will share this with my partner it seems both you and him are haveing the same kind of treatment ..

we have a liver scan next week also I’m assumeing this is normal .

will keep you posted ….