A Groundbreaking New Treatment

[Joefnh]

Thanks all....I made it through the treatment this week with the IVIG and a new chemo med called Rituxin which is taken with methotrexate. I'm only taking a very lite dose of the rituxin for now and a fairly high dose of the IVIG. I am stopping the Imuran in favor of the heavier duty immune suppressants. Unlike last June it seems that I tolerated this round of treatments. Last June I ended up back in the hospital for blood transfusions due to a bad reaction with the IVIG. Going forward I will be going back to the hospital every 8 weeks for a 5 day series of these infusions.

I had a PICC line placed for this round and will be getting the line taken out on Tuesday. In early November I will be going in for surgery to get a permanently implanted catheter set that will be placed right at the output of the heart in the center of the bloodflow from the upper atrium of the heart in an area called ten SVC, they call this a central line. The access point will be a device called a port, which will be implanted into my upper right chest that can be accessed with a special needle.

The second port and it's catheter will go over to my left upper chest and the catheter will be placed into my left jugular vein. This setup can be kept implanted for 15 to 20 years or longer as long as the pieces do not clog up. The ports used for chemo with cancer patients are very similar and are usually only kept in for a few years to cover the timeframe needed for chemotherapy treatment. In my case this will be more of a lifelong device as these or similar infusions will be needed over the long term.

I did make sure that the implants and catheters are fully compatible with strawberry & creme IVs

Marliss here's hoping you never have to deal with MG, I wouldn't wish this on anyone. It certainly forces you to adjust your expectations of what "normal" is, but you do end up learning a bit more about yourself, that's not a bad thing at all.

Marliss how did you find out you have the MG gene? Which of the 3 genes do you carry?

My sense of humor is finding its way back and it is the best medicine of all. Now with all of these medical implants I'm going to be more and more like a 'Borg' of the Star Trek genre.

What's the saying.... "Resistance is Futile" LOL

Take care all....

[MBombardier]

My father does a 4-week (4 infusion) treatment with Rituxin (monoclonal antibodies) for his non-Hodgkins lymphoma every six months. It is a miracle drug in my opinion. The first round was in 2004, and I saw weeping radiation burns on his arm look like they had done weeks of healing the next morning after his first infusion.

You may recall a discussion a couple of years ago between Hoosier1 and me. His wife was one of the patients for the Rituxin trial.