Waiting list-new to the forum

[Aquisi]

Went to Doc yesterday, wanting to start tx on incivek. First he tells me there's a waiting list, it can take more then two months to treat, over 40 people waiting. I couldn't believe it. On the way home I started thinking about that. How could that be if all I need is approval from my Insurance? Maybe there's more to it then I think. Then he tells me he rather start me off on victrelis because I had stopped once before because of depression and he wanted to make sure I can tolerate the Peg/rib before hand with anit-depression meds. Then he sees I have a high AFP tumor marker 149.4, so he orders a MRI to check for cancer. He's supposed to be one of the best in MUSC, South Carolina, to overwhelming for me. Any thoughts or questions would be appreciated. Thanks

[pjhep80]

it took me about a month to get the insurance approval and the meds in the mail, the specialty pharmacies are over whelmed right now with the amount of people starting this treatment...

[nygirl7]

While a lot of us wanted to get started right away, two months isn't really a long time to wait. Between the other tests you'll need and the approvals etc. two months is really not going to make a difference.  You'll see it will go by fast.

[can-do-man]

"Then he tells me he rather start me off on victrelis because I had stopped once before because of depression and he wanted to make sure I can tolerate the Peg/rib before hand with anit-depression meds."

Sounds like a very good ideal, Your doctor seems to know what hes doing. Waiting a few months will not hurt anything and it might give him more time to spend with you......Good luck

[flcyclist]

Although you're anxious to begin, I wouldn't worry too much about the two wait.  I put off the beginning of trt for six months for a variety of reasons.  This will give you plenty of time to sort things out.  As far as the choice between tela and vict, it sounds like your doc understands the challenges of trt and has your best interest in mind in guiding you through trt.    Hope things move forward quickly for you.

[can-do-man]

Should have added it seems your doctor does not want to espose you to one of the PI's right off, since theres a 4 week lead in with victrelis he wants to make sure you will be able to handle the peg and riba.

[paen53]

An MRI is a standard followup with an elevated AFP. I went through the same process a couple years back too.

Like some of the others said, use this time to your advantage. Some things that pop up in my mind are getting an eye exam and your teeth taken care of before tx starts. The eye exam is usually recommended and the dentist visit a good idea to take care of any issues that have cropped up and better taken care of now rather than when our blood counts may be compromised on tx.

Good luck to you instarting when the time comes, Pam

[Aquisi]

Thanks for all your reply's, truly appreciated. Any thoughts on the tumor marker being that high? Had two Ultra Sounds no negative reports on them. Doc doesn't necessarily think there's any thing to it, but having cirrhosis can lead to HCC.

[lynda607]

AFP can be elevated in those with hepc.  It a person has cirrhosis, it is not unusual for the AFP marker to be elevated.  Do you have cirrhosis?

[Aquisi]

Yes, grade 2-stage 4

[HectorSF]

If you have a very good hepatologist I would trust their judgment.

Waiting is not a problem as others have stated. There will be no difference if you wait a few months. Take it one step at a time. It took cirrhosis decades to develop you want to do everything in your power to give you the best chance of clearing the virus. Now is not the time to rush.

You have to be prepared before you start treatment. It is not just about having the meds paid for. If you had a depressive episode previously you will most likely have another. You must find an anti-depressant that works for you. Some anti-depressants take up to 6 weeks to become fully effective. No doctor should treat a patient with a history of depression or who had a depressive episode while on treatment previously who hasn’t gotten their potential depression under control. Treatment is contraindicated for such people.

PEGASYS
http://www.accessdata.fda.gov/drugsatfda_docs/label/2002/pegihof101602LB.htm#cont

WARNINGS

Neuropsychiatric

“Life-threatening neuropsychiatric reactions may manifest in patients receiving therapy with PEGASYS. Depression, suicidal ideation, and suicidal attempt may occur in patients with and without previous psychiatric illness.

PEGASYS should be used with extreme caution in patients who report a history of depression. Neuropsychiatric adverse events observed with alpha interferon treatment include relapse of drug addiction, drug overdose, aggressive behavior, psychoses, hallucinations, bipolar disorders and mania.

Physicians should monitor all patients for evidence of depression and other psychiatric symptoms. Patients should be advised to report any sign or symptom of depression or suicidal ideation to their prescribing physicians. In severe cases, therapy should be stopped immediately and psychiatric intervention instituted (see ADVERSE REACTIONS and DOSAGE AND ADMINISTRATION). “
Regarding your AFP results. Do you have past AFP numbers to compare it too? Is your AFP increasing over time?

Right now your doctor’s first priority to make sure you don’t have HCC (liver cancer). Ultra sound is not commonly used to diagnose liver cancer (HCC). At least here in the U.S. A 4-phase multidetector CT scan or dynamic contrast enhanced MRI are commonly used. A dynamic contrast enhanced MRI should be able to “see” any lesions that may exist. Remember AFP is not an accurate means of assessing the existence of liver cancer. It must be used in conjunction with imaging to be diagnostic of HCC. Unless if there is a constant escalating AFP over 500 which IS indicative of HCC. As was said by others patients with hepatitis C usually have higher than normal levels of AFP then people without hepatitis C.
I have hepatitis C, cirrhosis and liver cancer. My AFP numbers are vary around 50-60 as an example. Let your doctor and the radiologists perform the MRI and hopefully they will find nothing.

Best of luck to you.
Hector

[indy531]

I was DX beginning of July and just now starting tx-almost 3 mos for tests, ins auth., med training, etc.

[Aquisi]

Thanks for the info Hector, you have a wealth of info and I'm sure many on this forum appreciate you and others with hep knowledge. I've been roaming around on this forum for a couple of weeks now and from the info on here thought I needed to make a quick decision before keeping my appointment with Doc. I guess not. My AFP numbers have increased somewhat.10-14-2005=afp-21,3-9-2009=afp150.4, 2-21-2011=afp149.4.

Charlie

[summer7799]

I was diagnosed in May. Stil waiting to treat with no start date anywhere in the near future.

[HectorSF]

Charlie try not to worry too much about HCC. Stay focused on the present. Take it one step at a time. I hope your MRI turns up nothing and your AFP has reached its plateau. Then in due time you will be able to start treatment.

I'm keeping my fingers crossed for you.
Take care.
Hector

[Aquisi]

Hector my thoughts are with you, can't imagine what you've been threw, you must be on a transplant list, if so how long have you been waiting? I'll be 62 in Nov. and I'm a caregiver to my wife who has Polysystic Kidney Disease, she's been on a list for 15 months, just to give you an idea of where I'm at with this, your right it took decades for cirrhosis, but I feel a sense of urgency now  and am starting to feel some other symptoms. If I can just stop this in it's tracks. Anyway I'll stay focused, it's all good.

Hoping the best for you. And thanks.
Charlie

[alagirl]

I too was anxious to begin treatment.  I treated acutely, and I wanted to make certain I was beginning treatment well within the acute window.  But by the time all of my tests came back (my genotyping and viral load), and my shrink sent her letter that yes, in her opinion I wasn't going to go off myself or anything, and the very busy and annoying nurse-prac at the doctor's office FINALLY ordered the meds, and then the pharmacy called and consulted with me, and then the meds finally came...

All that took a month anyway.  And that's with me being what I'm sure was the most obnoxious patient ever trying to hurry up the process.

In your case, I understand that you're anxious to get started.  But you've got a lot on your plate.  Perhaps you can use the pre-treatment time to prepare as best you can for your time on treatment.  I became more ill than I had anticipated during treatment and I wasn't prepared.  My son basically dropped out of college to become my caregiver during that time.  I still hate that.

But at any rate, it's possible that you can use this time to find someone, or even several volunteers, who could come into help if you become too ill to care for your wife while treating.  I can't imagine the incredible responsibility of caring for myself and someone else while on tx.