Clyclo & Rituxan in Australia

[jola57]

Oh Kat, I am sorry your vacation turned out to be such a nightmare. This is another way how wegs is a bully, never far away, just to rear its ugly head when we least expect it. I ust learned of my hubby's friend's son who had a bad case of wegs, ended in hospital with kidney failure, spent some time being put back together then infused with rtx 2 times and is now in full remission for the past 2 years. No pain, great bloods and fully functional. But, in many it simply doesn't work as well as ctx, and, at least in Canada, first the doc must give ctx, then mtx and if they don't work,apply for approval of sponsored rtx. Only in dire medical emergency can rtx be given first. That is just how our society/governments work.

[obbie]

I am a newbe. I was finally diagonsed in June after 6 months of suffering and being told I propably have cancer. I have 3 masses in my lungs. THey are shrinking but 3 more starting. Started on Pred 60mg in June. this made a big difference to my quality of life in a very positive way. Had my first Cyclo infusion on Wed. Feel a bit weak, but still working and functioning as a human. I have a tube in one ear after loosing my hearing on one side. I give birth to what I know affectionaly refer to as small child out of my nose every 3 days. Its huge like nothing I have ever seen before, in fact I just have to stare at it a few minutes because I am still so shocked that it came from me. I am working towards remission, but am thankful to have some energy after 6 months of being the walking dead.

[Dirty Don]

Welcome obbie...glad you're fighting the good fight! Be patient and steadfast, hope you have some good docs. You sound positive, so you're already moving in the right direction. Please ask questions and share experiences & ideas on here. Everyone is responsive, and there's lots of good info available. I also suggest that you might start your own thread just so more people will see you on...sometimes mixing into another thread allows people to overlook your entries. The best to you!!

[annekat]

Welcome, Obbie,

I agree with Don... you can start a thread in the New Member Introductions section and more people will see it. The symptoms you describe sound a lot like some of mine.... the hearing loss, and big things coming out of your nose. Your description of it as like giving birth made me laugh! I hope we hear a lot more from you. A sense of humor is very welcome on here. I also had lung involvement but it wasn't described as "masses". You will find a great deal of variety in how people experience Wegs.

[pberggren1]

Welcome obbie. I am Yoda.....lol.

[greenjanet]

i know its a different condition, my mother had 8 courses of mabthera every 3 - 4 weeks through private out patients, she had no complications
and it put the lymphoma under control. janet

[Sangye]

Welcome obbie. Your description of giving birth through your nose is hilarious. Glad you found us!

[dennis2512]

hi my husbands back was aching all the time on ctx he has been off it for 4 weeks waiting for approval for rtx asap from public hosp here in melbourne.

[Lightwarrior]

I am a newbe. I was finally diagonsed in June after 6 months of suffering and being told I propably have cancer. I have 3 masses in my lungs. THey are shrinking but 3 more starting. Started on Pred 60mg in June. this made a big difference to my quality of life in a very positive way. Had my first Cyclo infusion on Wed. Feel a bit weak, but still working and functioning as a human. I have a tube in one ear after loosing my hearing on one side. I give birth to what I know affectionaly refer to as small child out of my nose every 3 days. Its huge like nothing I have ever seen before, in fact I just have to stare at it a few minutes because I am still so shocked that it came from me. I am working towards remission, but am thankful to have some energy after 6 months of being the walking dead.

Welcome and glad you found us. I know that you feel like you are giving birth....but pleas don't start naming them (LOL) You have a great sense of humor which I am convinced you need to survive this thing.

[Deanne Hull]

Hi my Name is Deanne and I am in Western Australia, I have been recommended by my specialist to undertake the infusion treatment of Rituximab in a couple of months, it has to be approved from the federal government so i don't have to pay for it. In the meantime I am on cellcept and steriods and are going to combine cellcept and methotrexate. My wegs in not bad and is coming down, the only thing i seem to be having difficulty with is the fibro myalgia that i have developed. I will let you know how that goes. Has anybody else tried this treatment? I seem to have more trouble with the meds than I do with the wegs itself. Anyway good luck with your treatment.

Kind regards Deanne