We saw the MO yesterday and went over most of the issues that have been brought up in the previous posts.

John is not a candidate for any clinical trials because of his closed esophagus. Most medications in clinical trials are in pill form and doctors are forbidden from crushing them to put them in the PEG tube since no one can predict what may happen as a result -- e.g. will the medication stick to the plastic tube, will it lose its efficacy, will its efficacy become way too strong etc, etc.

A biopsy is potentially dangerous at this stage. Since the behaviour of the cancerous cells which have "escaped" from the head and neck area is well-documented, the doctors do not feel that they want to take the risk of doing a biopsy. In addition, if a nodule is formed away from the head and neck area after a lapse of time post-treatment, it may indicate a possible new primary; however, when the nodules are found this close to the end of treatment, it is likely to be metastasis.

The deep vein thrombosis that John developed after his second session of cisplatin (an ultrasound at the end of July indicates that he still has blood clots in his legs)can also constitute problems for further chemotherapy at this juncture. The last time, there were times when his blood counts were so low that he could only be given half the dose of Heparin. Since any systemic treatment at this time is likely to Cisplatin or Carboplatin, we can expect a repeat of all of the problems.

I understand that no one wants to told that there is little that the doctors can do now. However, at some point, one has to seriously consider the quality of life issues and one has to trust the judgement of our doctors.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.