John's last CT scan indicated that there was only mixed response to the six cycles of taxol and carboplatin. What's new is there's now a hilum node that is 4 cm in size. If it is allowed to grow any bigger, it will cut off the airway. The MO would like him to get some prophylactic radiation for now. We saw the RO yesterday and radiation will start today. It will be 20 gy and will be for five days. We are lucky in that we could get treatment that quickly and our MO is in charge of drug development at the hospital. She is on the ball with all the new trials that are happening. I must say, though, that at times I feel like I am playing the game of whack-a-mole -- we have just dealt with one thing when another crops up. It just doesn't seem to stop. So, here I go, adjusting the sails once more.

Gloria, I'm sorry you are experiencing a series of 'tall waves' that force you to adjust your sails again.
I hope this week of radiation allows your husband to make progress and clinical trials become available to you soon.

Keep on whacking,
Patty

Hi Gloria,

I'm sure surgery was mentioned but maybe not an option for him. Good luck with the treatments and keeping the wind in the sails.

THinking of you guys. Hopefully the rads will do what it was meant to and nuke that sucker !!! hugs.

Argh Gloria! Time you two got a break. Pleased to hear that John will be getting some rads to help this.
It is also good news that your ship is still sailing and that you are able to adjust course . Sail on.
Tammy

Oh Gloria, rotten luck - it does seem Like whack-a-mole, doesn't it? I hope the rads give him some relief and maybe can be the catalyst for changing fortunes. You guys have had to adjust and adjust and I'm sorry for that, but clearly John hit the lottery when he found you. Stay strong and tell John to stay strong, too.

This stupid disease is so unfair, but you guys continue to fight and I really, genuinely take inspiration from that. I can't even tell you how amazed I am by your bravery and resilience.

I'll be thinking about you guys and rooting hard for you both!

"In this world we're living in, we have our share of sorrow
The answer now is don't give in -- aim for a new tomorrow" - Judas Priest

My mutant power is remembering silly heavy metal lyrics - stay strong

The Hellion

Thank you all for your posts and encouragement. We will plod along as best we can. The funny thing is John hasn't felt any discomfort from the cancer all this time -- no shortness of breath, no pain, etc. All the discomfort has been from the side effects of the treatments. I know this situation won't last forever, but if the rads can keep the nodes and lesions manageable, then they are worth it.

A particular shout-out to Hellion who is in the middle of his trial and who has taken time to support me. Thanks, I wish you the best of luck.

The waters are a bit rough but the ship is still sailing.

Gloria - I am so sorry to hear this latest news; I will pray that the radiation does its job and eliminates the tumor. I know this is a very hard journey for both of you; your strength and support to John is amazing.

Be sure to take care of yourself along the way as well. John has his pottery; do you have an 'escape' passion also?

How is John's swallowing coming?

Best,
Nancy

Hi Nancy,

It was so good to hear from you. I, too, hope that the radiation will help control the growth of the node. John was working with a dietitian and a speech and language pathologist on transitioning from the G-tube back to taking all his nutrition by mouth when we found out he had to have some radiation. In the mornings, he can swallow liquids fine, even a poached egg. After the radiation, he experiences difficulty getting the nutrition down into the stomach. He can swallow but it doesn't seem to go down very far. He has a swallowing assessment booked for Feb 26 when the radiation will be finished, we will probably find out more then. His RO did say the radiation will affect the esophagus lower down but we don't know the extent of the "damage" yet. It is still wait and see.