Consult

As many of you know, I'm 40 odd weeks in double dosing peg and much higher riba (per SOC). I wrote dr. an e-mail. He did not get back to me. This is the letter:

Good evening Dr. Black,

Please be so kind to read the following regarding Alinia. That I have yet to reach an undetected vl at 40 odd weeks was a blow, yet again (I know), better it go down slow than otherwise. The double dosing the Peg. and the high  ribaviran this month, only to rid  myself of  28 virons is a wee bit discouraging. I have recently been in contact with  a number of  Hep C patients who were either considered relapsers, slow responders, etc. All have treated multiple times and a few are in the midst of tx.They are now starting the Alinia, and each of them are Geno 1's.
I ask that you read this and give it some more thought regarding my treatment. I think there is little to lose, and may be much to gain. As you know, I now am an extemely slow responder, and years ago during the clinical trials, I was a relapser. I'm praying and hoping that this will be my last tx and I can focus on living my life once again. This tx has taken a tremendous toll on me,as you are well aware. I can't imagine having to do it all over again nor do I think I could. Looking at the stats., studies and my response thus far, gives me grave concern that that is a high probability.
Please reconsider the use of this drug as the added arsenal that might very well be the answer for me. I know that especially with this virus, there are no certainties....
Upon approval, I would be more than willing to get started immediately. Thank you.

PS: I copied and pasted Alinia Info from gaufs profile. HR had alot to say

Yesterday, NP mentioned he is still thinkin' about the Alinia....

I called a diffeent Univ. Hosp. (a better one) for a consult with what I understand is world reknowned dr. (Thanks copyman). My problem (as I see it) is I have to get my txing Dr.' s office to send my entire chart to them. The new team will go over it and decide  how urgent is it to get me in.  I'm at the point, that my NP has to get me recertified for the meds...and I am scared of offending them and they will just drop the ball and stop tx....or just treat me differently...all kinds of garbage going thru my brain....I don't want to hurt anyone's feelings or seem to be questioning their capabilities but,....
I need another opinion. Any suggestions?

[Myown]

I'm at the point, that my NP has to get me recertified for the meds...and I am scared of offending them and they will just drop the ball and stop tx....or just treat me differently...all kinds of garbage going thru my brain....I don't want to hurt anyone's feelings or seem to be questioning their capabilities but,....
-------------------------------------------------------
I know sometimes we feel we are at their mercy until the precert is approved. Maybe get the approval that you need to tx, but don't order the meds yet just incase the new doc has other plans for you, daily shots or re treat later date etc.

I really don't know Ladywhy, but this will bump you back up and maybe others will have suggestions.

[Lady Lauri]

Your Dr. ,not responding, should not get offended at a 2nd opinion in an already compromised tx situation. I can't imagine they would hold off on your meds because of that! I have no exp. with what your going thru, but I'd call and ask to talk directly to him and also tell him you'd like to have another Dr. with exp. in Alinia look over your case. That way not 'cancelling' them out yet, etc.

You know I wish you the best, hope you get this done. Sorry your having this added stress and troubles while on these meds too.

LL

[FlGuy]

First, you are the patient - the consumer and apparently a more difficult case (not personality-wise).  To reach out to other professionals is certainly not out of line and hopefully your tx doc would appreciate the fact that you are taking care of your care by extending the range of possibilities for yourself.
When I relapsed mt tx doc and I had a conversation in which we both agreed that an additional point of view would be helpful.  He did not get his nose twisted at all, he was all for it.  In fact, he agreed to execute the university liverhead's plan.  I summarized the plan in writing, the liverhead sent the tx the consult notes and we  were off and running with the new plan.
I'd suggest you talk with the tx doc, with you as the focus, and have a liver to liver chat with him.

[gauf]

I thought the letter both humble and sincere. With such low possibilities of sx from Alinia, I cannot imagine why your doc would be reluctant except perhaps he knows that once Alinia is prescribed, and God forbid you relapse, it would not be an option for you next go around. He needs to talk honestly with you. I myself vowed that I would never tox again. But you do recover, feel good again and learn how to handle it better the next time. I am about to start my 3rd tox. Not suggesting you should throw in the towel ( God no), but maybe the doc thinks you may have to tx in the future and can add the new drugs at start of treatment. OR maybe he is just too arrogant to read something a patient hands him.  Ask him his opinion on these things and find out where his head is at. We are with you and Godspeed.

[wyntre9]

'I'm at the point, that my NP has to get me recertified for the meds...and I am scared of offending them and they will just drop the ball and stop tx....or just treat me differently...'

I understand your hesitation to send the letter until your next dose of meds are approved and delivered.

I just went through that with my gastro.  He's great and his staff is wonderful but while i'd like to switch doctors coz of the 5 hour RT, I can't bear the thought of starting all the approval processes yet again.  Current Dr. has my meds approved through 72 weeks.  I get the last 3 month supply in a couple of days.  After I have the meds, i will then look into a getting a Dr. closer to where I now live.

if it were me, LY, I think I would wait to get the new batch of meds and then follow-up with a consult for Alinia.  Having gone through all kinds of bureaucratic BS myself, I totally understand your situation.

i agree, that you don't want to rock the current medical boat, yet.

FWIW, i did have a consult with a local gastro just in case i develope an emergency situation, and I explained that i would be switching to him once current TX is completed.  I had most of my medical records and I gave them to the consulting Dr. and he seemed satisfied with that.  in fact, he told me i was the most-notivated hep-c patient he'd ever seen, implying that many others don't keep records!  :)

You might want to consult privately with the other Dr. even without your full charts, as long as you can explain your situation, and see what his recommendation is.

hugs,

wyntre

,

[ladywhy]

Thank you so much for your opinions, kindness and care. :} You guys are the best!

[merryBe]

be sure to call and follow up...by law they are supposed to send everything...but mine didn't...and I assumed they would cause they said "no problem"...then didn't send my biopsy, cat scan etc. which really meant my second opinion was useless as the guy had no time to review any of it ahead of time, like he was supposed to.

so either pick up an entire copy of all your records and hand deliver them in advance to your second opinion...or else there's not much point.
I relied on the professionalism...and word given...and it failed to deliver.

[ladybug52]

You are gifted in the direct letter writing communication dept. Have you heard anything yet? I e-mailed you through med help awhile back, did you get it? I was cleaning out books this weekend and thought of you. Have you been able to concentrate or read with everything else going on?
Take care,
HUGS,
Bugs

[charm27]

Best wishes as always...excellent letter.
Praying with you things will get better.

Charm27