Craig (Sundanceh) update

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Comments

  • amcp
    amcp Member Posts: 251 Member
    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 thrilled to hear from you

    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

  • impactzone
    impactzone Member Posts: 551 Member
    Prayers your way. You have

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

    Chip

  • marbleotis
    marbleotis Member Posts: 720 Member
    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

    Happy to hear from you

    So happy to hear from you.

    Please keep us posted.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    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 see you here

    And typing on an iPhone, thats impressive. (I can't get my fat fingers to work on them, making it a real chore) 

    I admire you bullying through your treatments, looking ahead to more. 

    I hope you continue to find one that 'gets the job done'. We need your strenght. 

    Blessings!

    SUE/TRU

  • traci43
    traci43 Member Posts: 773 Member
    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

    thanks for the update

    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

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    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

    Keeping you close in thoughts

    Keeping you close in thoughts and prayer!  Your a true inspiration. 

  • Nana b
    Nana b Member Posts: 3,030 Member

    Prayers your way. You have

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

    Chip

    Please share what trials you

    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. 

  • Easyflip
    Easyflip Member Posts: 588 Member
    Thank you!
    Craig, I don't know you but you're obviously loved on this board. Thank you for pioneering a new treatment and best of luck. Hang in there and keep the positive attitude, at a minimum you're expanding the body of knowledge and that's worth a lot.
    Easy/Rich
  • Helen321
    Helen321 Member Posts: 1,459 Member
    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.

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

  • Phil64
    Phil64 Member Posts: 838 Member
    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 good to hear from you

    So good to hear from you Craig. You continue to be in my prayers. Blessings to you. Phil