UNC visit

[Stephanie78]

So, John and I made our way to Chapel Hill on Thursday night so that we could be at the transplant center (where they do the RTX treatments) at 8am SHARP!
His past 2 infusions of RTX were done while admitted into the hospital so honestly we had no clue how long the infusion would take. We did however know that when he had the CTX infusions he was there for 7-8 hours. So we kinda went in thinking it would be the same.

They hooked him up at 9 and we walked out at 12:30 (YAY). They also gave him a dose of stress steriods along with the RTX. Someone asked me if they were doing the 2 or 4 treatment. I asked them about this and they said that they were doing the 1000 doses so he would only have 2 (two weeks apart). Apparently when they do the 4 does it is 250 each. (I'm not going to pretend to know what I'm talking about, I'm just repeating it...and I don't know if those numbers are MG or what....)

He did great. Now to what the doctors said...

There is a small number of B Cells coming back. They DO NOT know if they are good or bad however they do know the WG is NOT active (inflammation) and that his ANCA is negative. (Plus he is feeling great). They had discussed doing another round BEFORE they received the blood work showing his Creantine had gotten higher. They expected the immune system to remain depleated for a couple more months so with the B Cells coming back so soon they wanted to be Proactive and do another round for a "just in case" situation. They said that is is great that his body is saying "Hey we need to make new Cells" however with the condition that John was in just 4 months ago they feel it is too soon to take a chance.
They did do more labs to check on the kidneys again. They said that they will probably schedule a MRI or Ultrasound on his Kidneys possibly on the 20th (when he does his next infusion). If the kidneys continue getting worse (the numbers are only SLOWLY going up not "OH MY GOD" kinda thing) They "MAY" schedule another Biopsy of the kidney.
At this point they ARE not thinking about another round of Plasma Exchange Because they really do believe that he is in remission. They said that they feel he will be one of those patients who have RTX as a maintenence type of thing. They said right now they are planning 2 infusions every 4 months (only because his cells came back in 4 months) but could vary on what the labs say in the future.

We did get to enjoy dinner with my best friend (who just moved to Raleigh a month ago... 10 minutes from UNC) and had a blast. John really enjoyed himself!

We are now back home thankful to sleep in my bed in the same house as our kids. We definitley miss them when we are gone! :biggrin1:

[Al]

So, John and I made our way to Chapel Hill on Thursday night...We are now back home thankful to sleep in my bed in the same house as our kids. We definitley miss them when we are gone! :biggrin1:

Excellent report, Stephanie! The latest research on RTX questions the 4 week protocol; more doctors seem to be recommending the two treatment variant. Plasma exchange would not do much except be a pain, since John is currently ANCA negative. Great that you had a fun trip!

Al

[Stephanie78]

Ya know Al - I think we all have questions on how doctors do things, and I don't say this for a debate, but for sincere wonder of it all. When John went in the hospital at the end of July he was at deaths door. When he went in, in May I thought that was the worse of it. We left the hospital thinking "Wow, that was bad". John planned on taking a few days off and returning to work. Then in the end of June he was back in the hospital. That visit I remember saying "Man I thought last visit was our worse, THIS is the worse" When we left the hospital he thought he'd take a couple of weeks off and THEN go back to work. The end of July.....ON that visit, THE DOCTORS said "This is the worse". They weren't refering to "me and John" they were refering to it being the WORSE case they had EVER dealt with. They told me to have my parents bring our kids to UNC because they honestly didn't know if he would make it.
That day they came to me and said "We have ONE more treatment we can try, but IF it doesn't work it is our last option right now". They sat me down and educated me on the Plasma Exchange process. Of course I agreed immediatly. We then spoke with John and then I signed the papers. I FIRMLY believe the plasma exchange saved his life.. My only question is "WHY IS THAT THE LAST OPTION". Why can't they do it sooner? I know it has it's risks but so does the other treatments.
I love his doctors. In fact some would say I worship the ground they walk on, but as a Non-Medical Field person I don't understand why something so effective is used as the "last option". When John was DX'd he only had sinus involvment. At his first hospital stay he found his lungs were involved. Second stay it was his liver and kidneys (along with sinuses) and his third visit we found that he added his spleen and heart to the list. If they would have dont the plasma exchange earlier would he have less damage?

It's just something I wonder about a lot.

I knew that the Plasma Exchange wouldn't be an issue this visit. But it was a painful experience for John and not knowing what was going on at the time, it was something that we feared.

[Al]

Great post, Stephanie! As it happens--sorry you had to learn this--WG is not, for most of us, a one-time-and -you're-done kind of deal. On the plus side, the weggie community is a whole new world, and not so bad....

As for the plasma exchange, I find that all very interesting. For me, it was actually the first line weapon, the justification being the lung involvement (the main doc was a nephro). I personally believe it saved my life. And I didn't 't mind the process. other than the need to have special plumbing. The blood nurses turned out to be a hoot. My wife took pictures (wives can be like that). But, hey, I am here to tell the tale, which is a good start!

Al

[Sangye]

That's great, Stephanie. (It also sounds like John doesn't have the uncommon negative reaction to rtx where it makes you extremely weak for 6-8 weeks. Yay for that!!)

I wanna clarify some info about the 2 and 4 infusion protocols. The 2-infusion protocol uses 1,000 mg rtx each time, for a total of 2,000mg. The 4-infusion protocol is weight-based. In a larger person this means there might be a big difference between how much rtx they receive in each protocol. That happened to me last year. I'd always been getting the 4 infusions. We tried 2 and it didn't work. Dr Seo and I agree that it was due to my weight. I had to do a round of 4 within a couple months.

I had also asked him about why there are 2 protocols. He said for Wegs they started with 4. As they became more comfortable with using it, they began to try 2-infusion protocols, which is what is used for every other AI disease. It's less exposure to rtx. As a result, more and more patients with less severe disease are getting 2 infusions.

Dr Seo also said that they're finding rtx works better the more times a patient receives it (ie, after the second or third round it should last longer). If that's true for John he could go longer than 4 months between treatments.

[Stephanie78]

Thanks Sangye! Like I noted, I was not even going to pretend that I knew what they were talking about because honestly I didn't understand it all.