I do hope the tumor news was positive. I am so sorry about the stoma -- hopefully a resolution is in sight. Please keep us posted -- I feel like you guys are a few months ahead of us although I suspect we will wind up taking different trial paths !!

Best wishes and best thoughts to you both!!

The Hellion

Hugs.. and I am so glad his attitude is still good. fingers crossed his tumor is smaller and continues to shrink.

Update:

John had his second CT scan since starting the trial and we met with the MO yesterday. It was somewhat disheartening to hear that even to the naked eye, new growths were apparent. The MO's decision was that John was to be demitted from the trial.

The last two months since the trial started have been a bit of a nightmare for us. The postural hypotension took several weeks to sort out, then he got aspiration pneumonia. A swallowing test yesterday confirmed the MO's suspicion that he has developed silent aspiration -- a rather dangerous situation as the test showed that he had absolutely no idea/response when he aspirated. Now, everything that he drinks has to be thickened.

We are unsure of the way forward. The MO would like John to take a month off to recover from the pneumonia and to rebuild his strength. I did ask about the trial that was previously tossed about as a possibility -- MEDI4736 in combination with another drug. It turned out that the doctor had already made inquiries on our behalf and it is only open to patients who have just come off the MEDI4736 monotherapy. So, that's not a possibility anymore for us. The MO said she would think about what other trials are out there that we could try.

John's take on the situation is that his quality of life was close to zilch the last two months and he's actually a bit glad that the MO made the decision to terminate for him. He feels that he is now on borrowed time, but honestly, it has been borrowed time for us for a long while now. This, however, does not mean we are giving up. We will continue to take it as it comes and I will update on what the doctor manages to come up with.

Despite the termination, we both feel that we have an outstanding team of doctors and nurses at the hospital. We have had nothing but the best care.

Always appreciate reading your updates. I feel that John, together with yourself, are pioneers with these Trials for the rest of us. Your experiences are so valuable for any others that have a need for this path. I sincerely hope that John has a good month now before he again tackles this. Good quality time, for you both.
Time to readjust your sails.
Tammy

Thanks Tammy. I always make a point of taking notes so that I can post what I know on the forum for anyone who might need the info further down the road. The trials may not have worked for us, but who knows, from our experience, the doctors/researchers may have learned something that may enable them to move forward. A trial that did not work is not a failure in my books.

Thank you for sharing this topic of interest even while going through your own struggles. I have been following the immunotherapy drugs myself since it seems to be the way of the future. Good luck moving forward, and hope the break from treatment will helps.

Hugs and blessings and fingers crossed something else comes up...