The good, the bad, and the ugly

Posted By
Shaneswife
5/16/2017 12:55pm
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Replies: 2

Well we saw the oncologist today for Shane's results. It was a mixed bag of news. His lung and liver mets have all shrunk by a few millimetres so that was good news. His brain however is having such a mixed response. Some tumours shrunk and some stayed the same but he has 10 new tumours that are fair sized. So the doc is consulting with another specialist to confirm that they can't do the radiation to the brain. Too many mets for the hospitals protocol. So he's going off targeted therapy and switching to pembro. And his spine tumours haven't changed but they are going to radiate the one at L4 as it's causing a lot of pain. 

 

I just just wish I could understand why the mixed response in the brain. Shrinkage stability and growth. It just doesn't make sense to me given the mechanism of targeted therapy. Sigh. 

 

The next biggest hurdle is that he's stuck on steroids so getting in pembro and having it take the brakes off a suppressed immune system who knows how that will work. The inc said he's done it and see the pembro fail and seen it still work so it's anyone's guess now as to how this impact him. 

 

And if hes not part of the 30-40% of pembro responders his other cancer spots will start growing again because of no longer being on targeted therapy. and it could hasten his death. 

 

So so many decisions to be made. 

 

Thanks for listening to me. 

 

Janis

Hi Janis,

I don't get a chance to be on here as often as I'd like any more, so I've gone back a bit to read some of your recent posts and first want to say I'm so sorry to hear of the challenges that keep coming up for Shane but I am glad he's going to receive Pembro!! (I'm just about to embark on a letter writing campaign here in Canada because we are going to have to kick, scream and fight like hell for it (if one has already had other immunotherapies) - lobbying the feds and all provincial counterparts).

Second, we're in ON too and I'm wondering to what extent you are getting help from CCAC and the ODB plan (reading about your ins. troubles). 

A couple of other things:

- don't worry about the steroids, he needs them and the therapies will work regardless

- my sister had radiation for pain for the spinal mets and it worked really well and pretty quick - the radiologist also told us that he had seen an "abscopal" effect happen for some even with that type of radiation

- Shane's gone through so much, so fast - we never know when the whole combination of treatments will finally reach some kind of "mass synergy" and turn the disease around. He's already had some response, which is great - you know he's a "responder." 

Last, if you feel a need to talk, don't be afraid to reach out via email either!! 

Sending lots of special thoughts out to you and Shane!! You take care!

Barb

Sorry sweetie.  You and Shane have endured so much.  However, the data is absolutely clear.  You need not fear the steroid will impede a response!!!  Now...you're right....in any other world than melanoma land....a 30-40% response rate would not be tolerated.  Here is melanoma world....it still sucks giant green hairy wizard balls...but....it's what we've got.  And, you're also right....partial responses make no logical sense.  Sadly, there is so much in melanoma we simply do not understand.  I wish I had more to offer.  Guess I just wanted you to know I've been listening and holding you and Shane in my heart.  Yours, celeste