Back from Mayo

[Brooke]

Hi,

I had appointments at Mayo clinic last week, Wednesday through Friday. My CT of my chest improved, my sinuses improved (ENT said there was one tiny spot that looked a little inflammed). My blood and urine tests were good, my B cells are still gone from my Rituxan I had in May. My pulmonary function test did not get worse but did not improve. Therefore my doc ordered a bronchoscopy while I was there. She said they were going to use a balloon or flexible laser treatment to open any scarring that they may see. Well they did see some scarring in my bronchial tubes, not trachea. Once they started to open that up they saw a lot of inflamation so they had to stop. I hated this bronchoscopy more than any other bronch I have ever had, this was my 4th one. I had a bad headache and nausia all day after. Friday was follow up with the doctor, she is putting me on a short course of steroids and nebulizer and more inhaled steroids and I am to go back in December and they are going to try and open this again. I said well what if there is still the inflamation? She said that wouldn't make her too happy and that might just show the Rituxan is not doing its job there and might have to try Cyclophosphamide. I started crying and she said don't cry, I don't even want to go there yet, we don't know if that is what you will have to do. Grrr... I am mad because my bronch wasn't worse yet it wasn't better as far as scaring so why do they need to open it up? Would the inflamation travel else where? I think that is what the dr is thinking. She also can not guarantee that the cyclophosphamide will work, so how many drugs do I have to try? All of them I guess.
Anyways, I am praying that the bronch looks better in December and then if so they will open it up and I will still do another round of Rituxan. She doesn't want me to do another round of Rituxan before then in case it doesn't work, then I would have put my body through that again for no reason.
Any thoughs, suggestions, opinions?
I still have some catching up to do on here I hope everyone is hanging in there.

[jola57]

Oh Brook I'm sorry that there was no significant change in the bronch. Don't lose hope, December is still 3 months away (well almost

[LisaMarie]

Brooke...i m the same mean and scary roller coaster as u...keep your chin up and maybe one day they will figure us out...sorry for the aweful bronc...will pray it get better

[elephant]

Brooke, sorry about the no change in your lungs...but give it some time. I just had a lung nodule (WG) removed and it took a year for me to breath without feeling short of breath or tightness...my lung function...parts of it was of a 80 year old...my doctor told me. It was about 11 months after my lungs improved...but my mix of meds are different.
Sounds like your improving in the other areas...so that is a good sign.

[Sangye]

Brooke, as hard as it is, try not to go too far down the road of "What if's." Just take things one day at a time right now. It's entirely possible the steroids will get the inflammation under control since the rtx is still working. You might not need ctx or anything else when December comes. Just focus on what you do need right now, okay? Hugs for you...

[JanW]

I agree with Sangye about not focusing on the what ifs. I'm not familiar with scarring/inflammation in that area at all, but if the questions you're asking is whether cutting in to open it up will create further inflammation, I think that the surgeons will weigh very carefully the risks/rewards in your particular case, and, considering that you are at Mayo, I know you are in good hands.

[Brooke]

Thank you so much for all of the responses. I love getting feed back from this group! I will try and stay as positive as I can and focus on what needs to be done right now.

[Terri]

AAhh Brooke, I hope things turn around for you soon.
I almost hate to report my good news but I have to tell someone.
I just returned from my trip to see Dr. Carol Langford at the Cleveland Clinic (I just love her)
I am doing as well as I can at the moment and my Pittsburgh Dr. is doing the right thing. The only thing she questioned was my using Metotrexate instead of Imuran. I couldn't remember why they switched me because I felt I was doing better on the Imuran but will ask when I return to Pittsburgh in a few weeks. My body has probably adjusted by now anyway and wouldn't make any difference.
Another thing was from some of my past labs was showing blood in my urine so she is going to have different cultures done to see if something is going on with my bladder.
I've always felt my Dr. was doing ok for me but now that I have a second opinion I know for sure and feel more at ease.

[Sangye]

That's awesome, Terri! Why did she prefer imuran over mtx? I always wondered what makes them choose one over the other.

[Terri]

She didn't really give me an answer on that Sangye. She wanted to know if my Dr. gave me a reason for switching me to mtx from Imuran and I couldn't remember if he gave me a reason. I just guessed that it was the lesser of the two evils?? I dunno.....so maybe they just see how you do on each and ene meeni miini mo. Who knows? I will ask him though at next appt.