Possibly out of remission after just a few months

[HopeinTN]

I posted this in reply to another thread and wanted to share...

I had a middle right lobectomy and upper right wedge resection back in May of 2011. It was before diagnosis and to rule out cancer. The tissue samples did show Weg’s. I also had another mass start showing up and increasing quickly. At the end of October 2013, I had to have another open lung surgery on the right lung and they found the mass to be a Desmoid tumor and not Weg's or cancer. This was a brutal surgery as they had to remove an area of 3 ribs that was about 4x4cm. They sewed a mesh patch to these 3 ribs to keep the good stuff in I guess. In addition to Weg’s and now also have Aggressive Fibromatosis.

The lobectomy was rough and I was in the hospital for 7 days and a complication of a collapsed lung. I’m a very active 41 year old and it wasn’t easy. I was told before my surgery that my Weg’s is in remission and down to 2mg prednisone daily and Bactrim every other day.

Bad News Alert- I have been in severe pain for the last two weeks and a new dense area and fluid is showing up in my right pleural space. I had a needle biopsy last week and it’s not a Desmoid tumor but Vasculitis…WEG’S.

I see my pulmonologist and Rheumatologist Thursday and hoping to get some answers and dread the Cytoxan talk. If two years straight on CTX didn’t keep me in remission but for a few months, what’s next.

Whomp...whomp...whomp!

[pberggren1]

I hate hearing the fact that you were on CTX for 2 years straight. That is horrific Hope. Do you not have a Wegs doc? What about RTX?

[mishb]

Two years straight is just two years too much of CTX

I'm sorry that you are flaring Katrina. I hope that they can arrange RTX for you - and soon

[Alysia]

Hi. I am sorry next is RTX, as others already wrote here. it is a miraculous med. insist on getting it.
good luck amd please update us. hugs and prayers....

[drz]

I am sad to hear about your medical condition. I hope you can get better results from future treatment and care.

[KimH]

I am so sorry to hear the news. RTX seems to be the next step. Many of us have had the treatment with great success. I hope that is an option for you. Sending you prayer and well wishes.

[MikeG-2012]

If you were on Cytoxin for TWO YEARS, then my opinion is that you need to find another healthcare team that specializes in Wegeners! Everything I read is that 6 months is the standard protocol, and that extended exposure to CTX is more risky to bladder cancer and other side effects.

Sorry to hear that you are going through all of this. I'm coming off a particular nasty flare myself, and this time, Rituxan was the answer, not Cytoxin a second time. My doc said Cytoxin was too risky and recommended RTX this time around.

Remember, as a patient, who is his own healthcare advocate, it is your responsibility to take care of you first--even if it means getting a second opinion on your case.

Ask around here for doctor and heath-care referrals. There are a lot of people who are very happy with their weg specialists on this forum.

[HopeinTN]

Thanks all for the well wishes. Yes, I have seen Dr. Seo at Hopkins and he and my docs at Vanderbilt agreed on my treatment. It wasn’t an ordinary diagnosis as my labs did not reflect the disease but the pathology did. I also have a urologist that monitored my bladder during this time. Other than zapping my immune system, fatigue and shingles, I think it did minimal damage.

I’ll update y’all after my appointments tomorrow.

[pberggren1]

Did you ever try RTX Katrina?

[windchime]

Thanks all for the well wishes. Yes, I have seen Dr. Seo at Hopkins and he and my docs at Vanderbilt agreed on my treatment. It wasn’t an ordinary diagnosis as my labs did not reflect the disease but the pathology did. I also have a urologist that monitored my bladder during this time. Other than zapping my immune system, fatigue and shingles, I think it did minimal damage.

I’ll update y’all after my appointments tomorrow.

The problem with CTX is that it can cause bladder cancer many years down the road. It isn't just while you're on it. My labs don't reflect the disease either and I don't think this is too unusual. Most docs depend on the the pathology. I would definitely do some research on the effects of CTX before agreeing to use it again especially when RTX is much safer. Just my humble opinion. I'm currently on CTX and really want off it, but have another 3 months on it for a total of 6 months.