worst fears?

We had a call from the hospital about the CT a few hours ago.The main news was that the pelvis tumour is advancing quickly, though the kidney tumour is stable (I thought that was good, but apparently not, in view of the pelvic one). The lung nodes weren't mentioned. Was a very perfunctory call. D was told not to restart Sutent, as it didn't appear that it was useful, and that they'd have a team meeting to discuss it next week. Till then, just wait. I know that here in Britain, there are no other drugs licensed for use on the NHS. The overall tone was very pessimistic. It does seem to me that 2 rounds is too soon to judge its effectiveness?? Too early in the day to decide it's not working?? I must get a list of questions/issues together for the meeting next week, will deal with that when not feeling so knocked sideways.  Then the GP came by; she'd been called by the specialist nurse from the hospital. She was very concerned, but her overall message seemed to be - this is the end of the line, we're here to make you as comfortable as possible. I know they are not in the business of giving false hope, but is this not rather an extreme reaction? This is to the wonderful man who's going to get up on stage and play in his band for an hour tonight!! He is being just grand. I feel like this is the dx all over again, and i am just sad sad sad.   My own faith at this point is utterly shaky, but D's is very strong, and i know he would appreciate your prayers.   My inner warrior is in hiding at the moment....i need to find her somewhere, or I am no use to anyone!!!    

Replies

LSMS
LSMS

Dear Dear Mereil,

I just sent you a message and then got this from you. What I said in my message, I strongly believe. Is there another cancer facility that you can go for a 2nd opinion about treatment options? I recall when my husband had poor results with one treatment, they stopped it quickly and it seemed like forever before we could get him on something else which, in our case, he had great results with. But, the time in between was terrible...the wait and the worry were almost unbearable. I am so sorry you are experiencing this now. If you and D are up to it, seek out another cancer treatment center or oncologist who can give another opinion.

I will keep you both in my prayers and hope with all my heart that you can get some other options for D.

Love,
Linda
msgrace
msgrace

Sweet Meriel,

I can only imagine the stress you are facing. Linda is so right....get a second opinion ASAP. There are other drugs for him to try.

My husband isn\'t on anything. I know how scary that is. Due to his kidney failure, he can\'t try any of the other drugs. The last CTscan and chest x-ray showed no change in the lung tumors. God is definitely at work!

Please don\'t give up HOPE. I admire your husband so much. Celebrate as he plays in the band tonight.

God bless you both.

Love & Prayers,
Ingrid