Friday, September 2, 2011

Back to Square One?

Well after an entire lunch time spent on the phone yesterday with the doctors offices, it seems they have completely changed their minds and are not going to do any kind of surgery on Don, deeming it to risky. Sure wish they could have told us that 3 months ago! Instead he is scheduled for 1 more doctors office appointment on the 19th of September and then on the 23rd we are going to the Victrelis class.

Victrelis is the new drug he will be taking along with the old "cocktail" of drugs. It was recently approved by the FDA and increases the chance of cure from Hepatitis C from 50 to 70%. Sadly it has it's own list of obscene side effects.. so much so that the company that manufactures the drug requires the recipients to take this class before they are allowed to use the medicine! I am concerned that it will scare Don. Please continue to pray for him.

This is what we know about the drug:

Blood problems. VICTRELIS can affect your bone marrow and cause low red blood cell, and low white blood cell, counts. In some people, these blood counts may fall to dangerously low levels. If your blood cell counts become very low, you can get anemia or infections.

The most common side effects of VICTRELIS in combination with peginterferon alfa and
ribavirin include:
• tiredness
• nausea
• headache
• change in taste

(the above list is from the drug company) What they fail to say is that with the distorted blood counts come a massive amount of side effects .. such as unimaginable muscle cramps, horrible bruising and unprovoked bleeding (nose, gums, rectal). Mood swings, excessively dry skin and dry mouth, hair loss, muscle mass loss, mental clarity... and that is just some of what we went through last time. He will be on this drug combination for 12 months.

The following information may be of interest to someone who has Hepatitis C and will start treatment soon.

Victrelis (boceprevir) is a protease inhibitor indicated for the treatment of chronic hepatitis C. The drug recently approved (May, 2011) by the Federal Drug Administration (FDA). Victrelis must not be used as a single therapy and should only be used in combination with peginterferon alfa and ribavirin in adult patients with liver disease.

Victrelis is available in 200 mg capsules. The dose of Victrelis is 800 mg (four 200-mg capsules) three times daily (every 7-9 hours) with a meal or light snack (use only in combination with perinterferon alfa and ribavirin (see other drug center information sites for use of these drugs); dosages may vary based on the patient's condition. Victrelis may not interact well with certain antibiotics, antidepressants, calcium channel blockers, and certain gout medications


bj said...

O, Julie, this is all to scary for me to even TRY to understand. I just pray it works for Don. Bless his heart...he has really been thru it...and besides, he is too dern good lookin' to even TRY to build a dog house. :)))
Hugs to the both of you. This all hasn't been easy, I'm sure. Hoping the cruise helped you both relax some. Know that you are in my prayers.
Thanks so much for coming by this morning. Always so good to see your visit.
xo bj

RiderWriter said...

Wow... this is why sometimes they say the cure is worse than the cause, eh? BUT that 20% increase in cure rate is a whole lot, so it has to be worth trying. Your "blog family" (including those of us who have never even met you :-) will be pulling for Don and praying that you will have the strength to support him!

(And pardon me for the stupid question, but I assume he is ON the transplant list... since you are "with" those surgeons... I guess you must exhaust all other options first, or is all this treatment "while you wait"? I think you have discussed all this but my memory is fuzzy.)

Julie said...

No question is stupid! It makes me feel so good that people are praying and pulling for him!

If we don't get rid of the Hep. C before he gets a transplant, he will be in the same boat as he is in now in just 10 years. He could get a transplant and then try again to take the drugs to get rid of the Hep - but he cannot have a transplant while he is on the drugs.

Confused yet?

RiverBend Farm said...

Oh, Julie, y'all are definitely in our prayers. This has not been easy for either one of you. I hope Don learns a lot in this class to make a decision he's comfortable with.