NEED ADVICE ASAP!!!

Colleen — 

I don't know what to tell you about going in person.

I just wanted to express my total dismay that you're having to cope with red tape & error & waiting, when the stakes are so high. I am glad your mother has you. (imagine if no one were there to advocate?) 

I hope things start coming together, and soon. 

Colleen — 

I don't know what to tell you about going in person.

I just wanted to express my total dismay that you're having to cope with red tape & error & waiting, when the stakes are so high. I am glad your mother has you. (imagine if no one were there to advocate?) 

I hope things start coming together, and soon. 

Colleen — 

I don't know what to tell you about going in person.

I just wanted to express my total dismay that you're having to cope with red tape & error & waiting, when the stakes are so high. I am glad your mother has you. (imagine if no one were there to advocate?) 

I hope things start coming together, and soon. 

I think that the most important issue is to get your mother's radiation treatments done properly and on time. Many private radiology conters and hospitals, especially "community" or "regional" hospitals (as opposed to teaching hospitals) are reluctant to lose potential income so they don't refer their patients to other, more appropriate, facilities. I would start bugging your mother's oncologist several times a day– actually go camp out in his/her waiting room if necessary– until they get your mother scheduled to complete her treatments at another radiation therapy location. If her therapy has been canceled more than once, I would not be satisfied with "everything will be OK from here on out". I would not trust her current radiation therapy center. I wouild insist on her going to a better, more reliable, radiation therapy center. It's "squeaking wheel" time!

As for the Zelboraf, my brother didn't start taking Zelboraf until after he had completed his WBR treatments so I don't think that this delay will be critical. However,  you do want her to be able to start it as soon as possible. Your corner drug store does not keep Zelboraf in stock; it is supplied by one of a number of "specialty pharmacies". The Genentech web site has a page about patient access to the drug at http://www.genentech-access.com/zelboraf/hcp/see-how-we-can-help/our-services/product-distribution or you can call their help line at (888) 249-4918. See what you can do to track down which company is supposed to be dispensing this drug and what is causing the delay.

I would not enourage you to just go to MD Anderson in hopes of getting an appointment. Scheduling delays are usually the result of medical records not being sent or being sent to the wrong department. The best thing you can do is to find out what records or images or information MD Anderson still needs. Then, once again, physically go to the provider in Baton Rouge who has the originals, get copies, and FedEx them to the RIGHT person at MD Anderson. You couldn't do that if you were already in Houston.

As you can see, being a patient advocate can be a stressful and time-consuming labor of love. You will have to assert yourself and make a pest of yourself all the while trying to remain patient and pleasant when you speak with people. This is probably not your normal or natural mode of handling things, but it looks like it's going to be necessar in this case. Your mother is very fortunate to have you in her corner.

I think that the most important issue is to get your mother's radiation treatments done properly and on time. Many private radiology conters and hospitals, especially "community" or "regional" hospitals (as opposed to teaching hospitals) are reluctant to lose potential income so they don't refer their patients to other, more appropriate, facilities. I would start bugging your mother's oncologist several times a day– actually go camp out in his/her waiting room if necessary– until they get your mother scheduled to complete her treatments at another radiation therapy location. If her therapy has been canceled more than once, I would not be satisfied with "everything will be OK from here on out". I would not trust her current radiation therapy center. I wouild insist on her going to a better, more reliable, radiation therapy center. It's "squeaking wheel" time!

As for the Zelboraf, my brother didn't start taking Zelboraf until after he had completed his WBR treatments so I don't think that this delay will be critical. However,  you do want her to be able to start it as soon as possible. Your corner drug store does not keep Zelboraf in stock; it is supplied by one of a number of "specialty pharmacies". The Genentech web site has a page about patient access to the drug at http://www.genentech-access.com/zelboraf/hcp/see-how-we-can-help/our-services/product-distribution or you can call their help line at (888) 249-4918. See what you can do to track down which company is supposed to be dispensing this drug and what is causing the delay.

I would not enourage you to just go to MD Anderson in hopes of getting an appointment. Scheduling delays are usually the result of medical records not being sent or being sent to the wrong department. The best thing you can do is to find out what records or images or information MD Anderson still needs. Then, once again, physically go to the provider in Baton Rouge who has the originals, get copies, and FedEx them to the RIGHT person at MD Anderson. You couldn't do that if you were already in Houston.

As you can see, being a patient advocate can be a stressful and time-consuming labor of love. You will have to assert yourself and make a pest of yourself all the while trying to remain patient and pleasant when you speak with people. This is probably not your normal or natural mode of handling things, but it looks like it's going to be necessar in this case. Your mother is very fortunate to have you in her corner.

I think that the most important issue is to get your mother's radiation treatments done properly and on time. Many private radiology conters and hospitals, especially "community" or "regional" hospitals (as opposed to teaching hospitals) are reluctant to lose potential income so they don't refer their patients to other, more appropriate, facilities. I would start bugging your mother's oncologist several times a day– actually go camp out in his/her waiting room if necessary– until they get your mother scheduled to complete her treatments at another radiation therapy location. If her therapy has been canceled more than once, I would not be satisfied with "everything will be OK from here on out". I would not trust her current radiation therapy center. I wouild insist on her going to a better, more reliable, radiation therapy center. It's "squeaking wheel" time!

As for the Zelboraf, my brother didn't start taking Zelboraf until after he had completed his WBR treatments so I don't think that this delay will be critical. However,  you do want her to be able to start it as soon as possible. Your corner drug store does not keep Zelboraf in stock; it is supplied by one of a number of "specialty pharmacies". The Genentech web site has a page about patient access to the drug at http://www.genentech-access.com/zelboraf/hcp/see-how-we-can-help/our-services/product-distribution or you can call their help line at (888) 249-4918. See what you can do to track down which company is supposed to be dispensing this drug and what is causing the delay.

I would not enourage you to just go to MD Anderson in hopes of getting an appointment. Scheduling delays are usually the result of medical records not being sent or being sent to the wrong department. The best thing you can do is to find out what records or images or information MD Anderson still needs. Then, once again, physically go to the provider in Baton Rouge who has the originals, get copies, and FedEx them to the RIGHT person at MD Anderson. You couldn't do that if you were already in Houston.

As you can see, being a patient advocate can be a stressful and time-consuming labor of love. You will have to assert yourself and make a pest of yourself all the while trying to remain patient and pleasant when you speak with people. This is probably not your normal or natural mode of handling things, but it looks like it's going to be necessar in this case. Your mother is very fortunate to have you in her corner.

I was treated at MDA  for awhile and I'd say it will not help you to physically be there. Maybe you can request another contact person. They will only make an onc appt once they have received everything which is probably going to be 2 weeks or so out from then.

Also maybe you can find out if the Zelboraf is being held up with the insurance approval or the Dr office. Mine came in a few days.  So many times I have felt like things were taking way too long, cancer is very frustrating, so many things are out of our hands.  

I hope this helps. 

Amy

I was treated at MDA  for awhile and I'd say it will not help you to physically be there. Maybe you can request another contact person. They will only make an onc appt once they have received everything which is probably going to be 2 weeks or so out from then.

Also maybe you can find out if the Zelboraf is being held up with the insurance approval or the Dr office. Mine came in a few days.  So many times I have felt like things were taking way too long, cancer is very frustrating, so many things are out of our hands.  

I hope this helps. 

Amy

I was treated at MDA  for awhile and I'd say it will not help you to physically be there. Maybe you can request another contact person. They will only make an onc appt once they have received everything which is probably going to be 2 weeks or so out from then.

Also maybe you can find out if the Zelboraf is being held up with the insurance approval or the Dr office. Mine came in a few days.  So many times I have felt like things were taking way too long, cancer is very frustrating, so many things are out of our hands.  

I hope this helps. 

Amy