Rituximab Delayed

[jmmilliorn]

Well, I'm two weeks late for my 2nd Rituximab infusion, but after a long battle with the insurance company, it was approved and scheduled for tomorrow. Now they just called to say it has been delayed for "re-certification". Whatever that means. Somebody didn't dot an "i". Now I'm "tentatively" re-scheduled for Wednesday if they can straighten out their red tape and paperwork tomorrow. AAAAAAHhhhhhh! Frustration! They should approve or not approve both infusions simultaneously since you need both. Why approve one separate from the other? If I wasn't already a cynic about insurance, I would become one.

[delorisdoe]

I am sorry to hear that. Also, that is a great picture.

[jmmilliorn]

Thanks. My 7 yr old granddaughter took it with her Fisher Price digital camera. Of course it is a before Prednisone shot. See my forum albums for the gruesome after shot.

[Chris G]

Oh Mike, the hoops you've had to jump through are ridiculous! I'm crossing my fingers & toes for you!

And I agree.... Great pic!

[Sangye]

Oh man, I cannot believe that insurance company. I haven't heard of a company authorizing one infusion at a time. Generally they authorize the drug, period. Then you just get as many infusions as you need whenever you need them. Sometimes they require you to renew the authorization, but it usually lasts for a year. Once you finish this infusion I suggest you check on this. You also might contact the Insurance Commissioner in your state.

And yeah, your picture is awesome! I meant to tell you when you posted it.

[jmmilliorn]

Well, as I write this, I am in the chair getting my 2nd of two Rituximab infusions at the little country cancer infusion center. So far so good. No allergic reaction and I didn't freak out this time like I did in Cleveland during the first infusion. I had to sign all those releases which practically guaranteed certain death from the stuff, and when they put the IV in my arm, I felt like I was already on death row. Then I felt the cold liquid move up my arm across my chest and down the other arm. I had a flashback moment of the green fog in the Ten Commandments movie killing all the first born (and I'm a first born son). Suddenly I couldn't breathe. They gave me some oxygen and I finally calmed down. I'm really brave today though. I even brought a pimento cheese sandwich to eat during the six hour infusion along with assorted other goodies. I'm using free WIFI (yes even out here in the country) and I may watch a Netflix movie while the drip does its thing.

[Sangye]

SO glad you're finally hooked up, for Pete's sake!!

As for the anxiety, you might want to ask your doc for a mild anti-anxiety med next time you do rtx. Once I watched a woman psych herself into a full-blown anaphylactic crisis. She had come in terrified to get an iron infusion and cried with panic through the whole thing. At the end her mind got the best of her and she couldn't breathe. With that particular drug, any reaction would have happened in the first few minutes. They stopped the reaction and she calmed down. Then she started retelling the story to her husband, got herself hysterical again and went into full-blown anaphylaxis again. There's no way that can happen from a drug. They finally had to take her to the ER as it was beyond what the infusion nurses could handle.

The mind is very powerful. I've seen a number of true allergic reactions, making it easy to get frightened. Also, the solumedrol increases anxiety so it's much easier for your mind to go wild. When I get rtx I view it as healing nectar that is purifying all illness for myself and all beings. It keeps my mind calm.

[Chris G]

YAY!!! Finally! Relax and enjoy the show! Let us know how you're feeling in the coming days.

My 2nd (of 2), is Friday. I've been feeling pretty good for the last 4 or 5 days (except post mtx which was yesterday).

How has your SOB been lately?

[jmmilliorn]

I hope this is my last infusion--unless I have a relapse. I'm supposed to be put on AZA after this. They are doing the 2 infusions of 1000ml instead of the four infusion thing. I asked about this, and Dr. Villa-Forte said that the two infusion method was gradually replacing the 4X infusions. I'm glad I only have to have two. Kills the whole day--although I'm not doing anything anyway since I became ill. I didn't have any movie flashback today and the cool chill feeling was welcome since I was having a hot flash at the time. I used to be so thin that I mocked those sweaty fat people. Well the shoe is on the other (fat) foot now. Ha!

[jmmilliorn]

Still can't believe they are giving you both chemicals. MTX didn't give me side effect, but I did have a bad rash because of it, so they took me off it. I also have felt a little better every day since the first infusion--except for one bad day. Figured that one out finally--amusing separate story. I'm still very weak and shaky most of the day unless I'm just sitting. I feel like I have jello thighs. I am still SOB, but I think I'm a little better--though not much. I was having trouble walking to the barn for my truck--75-100 yards away. Today I made it up the slight grade without stopping to rest or gasping for a deep breath. I got an instant headache as soon as the infusion started, but it isn't too bad. On steroids I haven't had a headache in a long time.

[jmmilliorn]

I'm just home from RTX infusion #2 of 2. No allergic reactions, no visible side effects except for a slight headache. It only took 5 hours instead of 6, too. I'm ready to feel better now. The two infusions are finished and I am down to 15 mg./day of Prednisone. Going to 12.5 a week from Sat. I'm still SOB and have the Jello legs, but I feel pretty good just sitting around the house. The blood clot in my right leg is still slowing me down some, and I still need to get my constricted throat worked on once I'm off the Coumadin (if I ever am). And then there is the mysterious nodule in the right lung that suddenly appeared recently. All in all, I encouraged. I can deal with these remaining symptoms and conditions if I can just keep getting better instead of regressing for awhile. Tomorrow is a new day. Hope it is a good one.

[Chris G]

Glad to hear it went well Mike! Hopefully, the SOB will clear up in the coming weeks - perhaps the nodule too. Any chance the throat could clear up on its own, now that you've had the rtx treatments?

[jmmilliorn]

Chris,
I'm afraid not. I thought it might be WG related, so I went to an ENT and had a barium swallow CT done. I thought it was a stricture or just inflammation from WG. What the CT showed however was a Zenker Diverticulum--a sort of blow-out or cul de sac in the throat that was causing me to choke when food log jams there. To make matters worse, I had a ZD about ten years ago surgically removed (down the throat). That surgery left some scarring and narrowing plus it interrupts peristalsis at that point making swallowing more difficult. Food just sticks in my throat. I have to avoid certain foods, take small bites, swallow consciously with every bite and every bite is more of a gulp-hard swallow. No automatic reflex swallowing or just don't think about it eating unless it is ice cream, greasy Mexican food or Italian. Forget biscuits, dry chicken or dry beef. I have to get off the Coumadin or go back on Lovenox shots in the abdomen if I want the operation, but I'm afraid to doing any more cutting on an already inflamed body. Don't want to kick off any more WG symptoms or rile up my immune system. I'm still anemic, too.