Search:

Good luck~ I am much happier w/ RTX than I was on CTX. I also see Dr. Langford and did CTX for just 4 months....was on Imuran for maintenance and had a relapse w/in 3-4 months. My second infusion...

Angela,
Glad to hear your Cleveland visit was a success. I hope you rec'd my other private message responses to your questions....I wasn't sure if I did it right?

Sounds like you have a good...

Interesting....I've read several folks who have much worse loss in the left ear.....me included. Maybe WGs favors the left side....I know it's not likely yet slightly strange...like most things...

Completed round two of RTX. now we wait and see how the lung scan turns out in @ month. Will continue w/ pred. taper and bacterim 3x a week. No maintenance drug which I am happy about. Imuran and...

I see Dr. Langford at Cleveland Clinic and I will be checking into the hospital for my second rtx infusion tomorrow. It is my understanding that this is the common practice there because of hassles...

Oh something else interesting....I did a detox cleanse right before the severe onset of my disease....cleansed beginning of March....lost my hearing beginning of April of 2009....wonder if it helped...

Thanks for explaining ama Sangye, I looked into a bit. Do you currently see and/or use aryuvedic medicine as a compliment to your treatment?

I was curious, what else besides candida can coat your tongue w/ white stuff?

Great news Jan...you have provided some great perspective and helpful information to everyone out there. I hope your recovery is quick and easy.

Yes it's funny Sangye---CTX was the furthest thing from my mind on the drive up (I was thinking NO WAY am I taking that). I was thinking I am going to go for the injected mtx. or the rtx. But after...

Judy,

I had quite a bit of numbing of the throat/tongue pre-dx. I have had all kinds of MRI's, CT scans of brain, sinus, head, lungs, etc. None of them showed anything neurally? wrong so not...

Yes this is my first time (and LAST--fingers crossed) on Ctx.

I didn't choose RTX. because of the vast amount of uncertainites associated w/ it for Wegs. In the end of the day I chose to go w/...

So I am back from Cleveland, nodule in my lung continues to grow, sed and cpr are up, ear congestion, drainage and sinus pain are all back. This after over 5 months of mtx. So it seems this is not...

I am currently on 10mg. but I was on 60mg. and various amounts coming done. I never took this acid blocker stuff? I never had any problems w/ my stomach, however I should be on it anyway? I am...

Sangye, what is an acid blocker? Is it something prescribed? I am currently taking only 10mg but was never on that? Thanks~

So if it is available to me I may even want to consider changing to rtx. from mtx. just because of the chemo classification. The one downfall of the rtx. that they have discussed w/ me is that they...

Sangye, first off so happy you are off for your second treatment. I hope it goes smoothly and really knocks the wgs down and out this time. I am also curious why you are much more keen on Rtx. vs....

Thanks for the replies. And once again seems like the bottom line is everyone is different. I go to Cleveland next week to follow up w/ the bronch. results and possible treatment changes, so I am...

I know this has been talked about many times yet I am still wondering about the state of remission. Do people generally feel 50%, 75%, 100% better during these times? I know we have to find the new...

I also see a wgs ENT specialist at Cleveland Clinic, Dr. Weber. Unfortunately not a lot of options to "fix" anything just maintain and keep infection away. I have perforations in both eardrums...

The congested hearing, loss and tinnitus is how my wegs presented itself (no sinus, nose involvement). I went to bed on a Fri., woke up Sat. not hearing so well, continued on like this for a while...

Just for another perspective...I have been on various doses of pred. for the last 8 months and have not gained a pound....actually I have lost quite a bit. I think the stress, anxiety and depression...

This brings up a question for those medically savvy folks out there. What is the process of these nodules...biological what is happening? Are the nodules usually attached in the actually blood...

Thanks Sangye. Yes I have called wegs so many horrible names and am so MAD at it right now. Of course, I have cried enough tears in the last 24 hours to fill a swimming pool. Before when I was in...

Thanks for all the insight and thoughts, I appreciate it. This is exactly the procedure they will do and it will be at the Cleveland Clinic, where they do them like clockwork from my understanding....