Craig (Sundanceh) update

Sundanceh said:

How about an update from me?:)
Thank you so much for the warmth sent. Much needed. Trial is going well, paperwork tedious. After just two weeks I've cut back the dilaudid by 75% at least. Not paralyzed either-----whew!

Still 6 weks to go. I might do this again while trials are on. I did dosage of 4....would try the 16 in hopes of wiping it out permanently.

So there is hope here a d I hope folks wil benefit from it. It's a real life leap of faith but you have to take calculated risks along the way. We have to.

I'm also eligible for two cancer clinical trials. One looks bette and more promising. I'm gonna be busy for awhile.

We stopped the oxy due to 3 in a row allergic reactions...so right now just folfiri minus that is what I'm doing now. Not great but options are limited now....holding the line so far.

I'm about to lose my job this week. Automatic termination after 1 year. I'm sad I can't make it back: did not want it to end like this.... After 25 years of dedicated service this gels funny. Nothing I can do about it. They are probably relieved I'm gone now.

Went thru all the SSDI paperwork runaround and got it taken care of.

Well that's the highlights:).

Hanging in there....still with you.

Typing on old iphone3... Other pc just keeps having problems constantly. That also prevents good posting from me just one pecking here. Maybe save up for Microsoft Surface w/keyboard....don't know.

Anyway hang in there with me. I was saddened to hear of JGB,s and ****,s passing...that hurt.

I'll try to be here as long as I can...love to all!

- Craig

Craig, I seldom get on the site anymore.  I only come on line to check mainly on you and a few others I remember.  I am praying for success with your treatments and that the clinical trials will buy time if not cure you.  You are an inspiration to so many on this site and have been seen you typed your first post.  I will never beable to express what you meant to me when Frank was first diagnosed and throughout his journey until the end.  You were a lifeline.  You are such a blessing to this site and hopefully we are to you.  Will keep you close in thought and in prayers.

Anna

Sundanceh said:

How about an update from me?:)
Thank you so much for the warmth sent. Much needed. Trial is going well, paperwork tedious. After just two weeks I've cut back the dilaudid by 75% at least. Not paralyzed either-----whew!

Still 6 weks to go. I might do this again while trials are on. I did dosage of 4....would try the 16 in hopes of wiping it out permanently.

So there is hope here a d I hope folks wil benefit from it. It's a real life leap of faith but you have to take calculated risks along the way. We have to.

I'm also eligible for two cancer clinical trials. One looks bette and more promising. I'm gonna be busy for awhile.

We stopped the oxy due to 3 in a row allergic reactions...so right now just folfiri minus that is what I'm doing now. Not great but options are limited now....holding the line so far.

I'm about to lose my job this week. Automatic termination after 1 year. I'm sad I can't make it back: did not want it to end like this.... After 25 years of dedicated service this gels funny. Nothing I can do about it. They are probably relieved I'm gone now.

Went thru all the SSDI paperwork runaround and got it taken care of.

Well that's the highlights:).

Hanging in there....still with you.

Typing on old iphone3... Other pc just keeps having problems constantly. That also prevents good posting from me just one pecking here. Maybe save up for Microsoft Surface w/keyboard....don't know.

Anyway hang in there with me. I was saddened to hear of JGB,s and ****,s passing...that hurt.

I'll try to be here as long as I can...love to all!

- Craig

So happy to hear from you.

Please keep us posted.

Sundanceh said:

How about an update from me?:)
Thank you so much for the warmth sent. Much needed. Trial is going well, paperwork tedious. After just two weeks I've cut back the dilaudid by 75% at least. Not paralyzed either-----whew!

Still 6 weks to go. I might do this again while trials are on. I did dosage of 4....would try the 16 in hopes of wiping it out permanently.

So there is hope here a d I hope folks wil benefit from it. It's a real life leap of faith but you have to take calculated risks along the way. We have to.

I'm also eligible for two cancer clinical trials. One looks bette and more promising. I'm gonna be busy for awhile.

We stopped the oxy due to 3 in a row allergic reactions...so right now just folfiri minus that is what I'm doing now. Not great but options are limited now....holding the line so far.

I'm about to lose my job this week. Automatic termination after 1 year. I'm sad I can't make it back: did not want it to end like this.... After 25 years of dedicated service this gels funny. Nothing I can do about it. They are probably relieved I'm gone now.

Went thru all the SSDI paperwork runaround and got it taken care of.

Well that's the highlights:).

Hanging in there....still with you.

Typing on old iphone3... Other pc just keeps having problems constantly. That also prevents good posting from me just one pecking here. Maybe save up for Microsoft Surface w/keyboard....don't know.

Anyway hang in there with me. I was saddened to hear of JGB,s and ****,s passing...that hurt.

I'll try to be here as long as I can...love to all!

- Craig

Craig - Glad you are holding in there and I hope the clinical trials help you.  dilaudid was way better for me than morphine after my last surgery, glad it's helping you.  No more oxy for me either, allergic reactions--Idon't miss it.  So sorry to hear about your job, but maybe this will allow you to focus on you and not worry about getting back to work.  Take care, we miss you and hope you get that Surface and are back on the board!  Traci

impactzone said:

Prayers your way. You have

Prayers your way. You have been a huge inspiration to many.

Chip

Please share what trials you are undergoing. Good to hear what is out there. 

Hope you get your SS, LTD and benefits in line so you don't have to worry too much on the financial side. 

Sundanceh said:

How about an update from me?:)
Thank you so much for the warmth sent. Much needed. Trial is going well, paperwork tedious. After just two weeks I've cut back the dilaudid by 75% at least. Not paralyzed either-----whew!

Still 6 weks to go. I might do this again while trials are on. I did dosage of 4....would try the 16 in hopes of wiping it out permanently.

So there is hope here a d I hope folks wil benefit from it. It's a real life leap of faith but you have to take calculated risks along the way. We have to.

I'm also eligible for two cancer clinical trials. One looks bette and more promising. I'm gonna be busy for awhile.

We stopped the oxy due to 3 in a row allergic reactions...so right now just folfiri minus that is what I'm doing now. Not great but options are limited now....holding the line so far.

I'm about to lose my job this week. Automatic termination after 1 year. I'm sad I can't make it back: did not want it to end like this.... After 25 years of dedicated service this gels funny. Nothing I can do about it. They are probably relieved I'm gone now.

Went thru all the SSDI paperwork runaround and got it taken care of.

Well that's the highlights:).

Hanging in there....still with you.

Typing on old iphone3... Other pc just keeps having problems constantly. That also prevents good posting from me just one pecking here. Maybe save up for Microsoft Surface w/keyboard....don't know.

Anyway hang in there with me. I was saddened to hear of JGB,s and ****,s passing...that hurt.

I'll try to be here as long as I can...love to all!

- Craig

Great to hear from you Craig.  Praying that the trials kick it right out of your body!