Possibly out of remission after just a few months

[HopeinTN]

The pain is getting worse by the day. Deep breaths hurt, getting up or sitting down hurts and driving is almost unbearable due to the movement. I think it's fluid again. I emailed my docs but they don't seem to be concerned. I hate to keep having x-rays and I have a CT on 4/11. I may have to demand one.

Uggg.

[renidrag]

Time for ER? RTX may not be good for you.
Dale

[HopeinTN]

I'm thinking that too but I hate to go and they look at me like there's nothign wrong. I'm sure we can all relate. It's so dang annoying. I can breathe ok, it just hurts with deep breaths and movement. My face seems fatter than normal so I'm thinking fluid, maybe from the big dose of prednisone with the RTX?

[renidrag]

Thought my lungs would jump out of my chest today with the cooooold wind. Perhaps you are right with the big dose. Wait til morning?

[Alysia]

Hi Katrina.
I would ask a doc or go to ER. you need to see if it is not a reaction to the rtx.
they give it with 125mg pred-IV. I had "moon face" after it for a bit.
please update us. prayers and hugs

[sectech1]

What a terrible disease, I wish you the best!

[drz]

I'm thinking that too but I hate to go and they look at me like there's nothign wrong. I'm sure we can all relate. It's so dang annoying. I can breathe ok, it just hurts with deep breaths and movement. My face seems fatter than normal so I'm thinking fluid, maybe from the big dose of prednisone with the RTX?

I think my trouble breathing was the worst part of having Wegs. Sorry to hear you are having to deal with it now. Hope it gets better for you soon.

[HopeinTN]

I had my 2nd treatment on my birthday 4/02. It went fine. Yes, my face looks like a baloon. Yuck. I'm doing fine but the pain is not going away. I had a CT and they are again watching a mass in this lung that has continued to grow since I had a needle biopsy back on 2/07/14. My oncologist that treats me for the Desmoid tumor part, was alarmed and went over it with the surgeon. He called and I have to see him tomorrow.

So, the pain is from the inflamtion and mass (which shouldn't really be there due to the prednisone and treatment) as well as two fractured ribs that started showing up. They removed a portion on 5-7 and ribs 4 and 8 are fractured from the surgery.

Aside from this, life is grand and I'm above ground. I can also name 5 people that are far worse of than me. Sad but true.

[KimH]

I am so sorry that you are going through such a rough time. I am thinking of you, sending well wishes, prayers and belated Happy birthday.