sandtdad

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 22 total)
  • Author
    Posts
  • in reply to: Complete Guidelines for Radioembolization #58125
    sandtdad
    Member

    Fatema,
    My doctor said that two weeks for chemo to clear out was ok. So 10 days in your mom’s case does not sound unreasonable.

    I am scheduled for PET scan Monday and mapping on Tuesday. And then procedure on April 3. I will keep everyone up to date with progress and hope that this treatment can be the start of a long path for many of us here
    Ed

    in reply to: Complete Guidelines for Radioembolization #58124
    sandtdad
    Member

    Percy,
    I was lucky enough to get insurance approval fairly quickly. So that is all set to go. I will continue to update the board. Everyone here has been such a great source of support. I hope that we are all moving toward that day when this terrible disease is controllable and curable.

    Fatema,

    I hope all is going well for your family and that your mom has great success with the treatment.

    My original treatment was the GEMOX + panitumimab trial….I did treatments every other week and had 18 of them…so 36 weeks of treatment

    I am going to find out how long I need to be off gem tomorrow. Because I have been on treatment so long I think the plan will be wait until after the radioembolization is done to figure out if more chemo is necessary.. But gem + capecitabine has been mentioned

    Ed

    in reply to: Complete Guidelines for Radioembolization #58121
    sandtdad
    Member

    Percy and Fatema,

    I am currently working with my radiologist to schedule the radioembolization.
    I just finished my 18th cycle on the trial and the skin toxicity associated with the panitumimab continues to take a toll. I also had to stop the oxaliplatin due to nueropothy.

    I will keep you up to date as I progress and I have my fingers crossed this will kill the remaining 40% of my cancer

    Ed

    in reply to: Complete Guidelines for Radioembolization #58115
    sandtdad
    Member

    Percy
    I will follow up with my onc and interventional radiologist but my guess is that data is very limited
    The study does discuss that the reason for difference may be aggressiveness of tumor or length of treatment of those on centuximab. Which seems reasonable
    Either way I will hope that I am different enough from centuximab cohorts in this study to get a more median intraheptic response

    in reply to: Complete Guidelines for Radioembolization #58110
    sandtdad
    Member

    Percy
    Thanks for all the great perspective. It helps a lot to have someone as knowledgeable as you sorting out some of the same options

    Yes I am still on the trial….17 treatments…and I had a scan last week.it was mostly stable….my large tumor went from 4.0cm x 3.8 cm to 4.1 cm x 3.5 cm

    The right side has not changed much since treatment 12

    So the debate becomes continue with a treatment that is keeping me stable (side effects on skin and neuropathy are no picnic), try new nchemo with hopes of shrinking some more….or embolism ….

    I agree with your philosophy….I have two teenage boys and so I am hopeful if I can keep my boat floating for a couple of years….someone will throw me a life preserver

    in reply to: Complete Guidelines for Radioembolization #58111
    sandtdad
    Member

    Percy
    Thanks for all the posts
    It looks like I will be headed for radioembolization in the month
    I am trying a couple follow up surgical opinions first
    Do you have any feel for the likelyhood of surgery after RE
    Thanks

    in reply to: insurance denying radioembolization #57628
    sandtdad
    Member

    Jim,
    If you don’t consider it private information…can you let us know how you friend has done since November with the radioembolization?
    Ed

    in reply to: insurance denying radioembolization #57627
    sandtdad
    Member

    Byron,
    I am in the middle of the process right now. I should hear from the insurance company soon. We have been getting support from Sirtex, the maker of the spheres. They seem to have some insights in how to discuss with the insurance companies.
    Ed

    in reply to: just learning about CC #57071
    sandtdad
    Member

    Jessica,
    I am currently being treated at mass general in Boston and have meetings with many of the doctors, oncologists, radio oncologists, and surgeon…
    If you don’t mind me asking ….what is the referral name you were given?

    If I met with your referral maybe I can give some insight?

    in reply to: Stanford Trials #56319
    sandtdad
    Member

    Pcl1029
    I tried some cut and paste with my blackberry
    Let me know if it worked
    Thanks

    in reply to: Stanford Trials #56317
    sandtdad
    Member

    Pcl1029
    I sent an email but I am not sure it went through. Can you confirm?

    Thanks

    in reply to: Stanford Trials #56315
    sandtdad
    Member

    Percy
    I would be glad to give you the requested information.
    I am still on the trial and headed for treatment 14 this week
    We are getting to an interesting point as scans show reductions, but the third scan had a smaller reduction than the first two.
    Quick question how do I get the email address?
    Thanks

    in reply to: Stanford Trials #56312
    sandtdad
    Member

    Pcl1029
    Do you have any opinion about radioembolizations. It is being discussed as a potential treatment option and i would appreciate anything you might have to share?

    sandtdad
    Member

    Gavin
    Thanks for the post
    My doctor has been talking about this mutation to me and seems very excited about the possibilities. He said a lot of companies and hospitals are looking at how to target it. He wants to keep an eye out for any phase one trails. He said timing could be anything…but good to think there is a potential new treatment out there.

    in reply to: Latest scan #55640
    sandtdad
    Member

    Byron,
    I am on a trial similar to the ones mentioned by Eli. Instead of centuximab I am on a protocol that combines panitumimab with gem/ox. The centuximab studies seem to have some better results but the concepts are the same. Combine chemo with a monoclodial to slow growth while killing at the same time

Viewing 15 posts - 1 through 15 (of 22 total)