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 :crying:

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

[Alysia]

Hi. I am sorry :sad: 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.... :hug2:

[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.

[annekat]

I'm so sorry, Katrina. I agree with everyone, you need to get RTX. To me your post didn't say that anyone had suggested putting you back on CTX, just that you were dreading "the talk".... it is normal to dread the unknown sometimes. I'm sure that since you have seen Dr. Seo, and if your local docs are in touch with him, then the right choice will be made not to put you back on CTX and getting you started on RTX. This may happen to me someday, too, and since I have never taken RTX, I will likely have some anxieties about it no matter what. This is human nature. Best of luck, and let us know what happens.

[Debbie C]

Katrina,how big is the mass they found. I have 2 small mm size nodles that they are not worried about,in fact I don't need to get another scan until Sept. But mine will come and go and my one dr. said people can get nodules over nothing. Maybe they just need to up the pred and definatelly no more ctx. Keep us posted, sorry to hear you are going through so much

[HopeinTN]

Yes, I was only on CTX, and not tried anything else. I’m aware of the bladder issues but I have to trust they know what they are doing. I drank a lot of water during this time and hopefully that added some years to my life.

Correct, I have not been told what the next step is or which drugs. I’m hoping I go in there and they say they made a mistake. Girls got to dream. This is all good info and I will mention RTX if he mentions CTX. We’ll have a stand-off.

Not sure of the size but measured in cm’s. The tricky part here is that I also have Aggressive Fibromatosis, and I see an Oncologist for this. They are very particular about things getting bigger in there. They watched the last one grow and grow over 15 months and it got so much bigger that I lost a pretty substantial section of three ribs the get close to a clear margin. I lost a 4x4cm section of ribs 5-7 and fractures to 4 and 8.

It may be Weg’s since the results say Vasculitis. The pain from the fluid build-up and pleurisy are enough to make me want to scream regularly. It seems like cruel and unusual punishment. It stinks and I realize others have it far worse. That I don’t feel crappy on top of being in constant pain, is a miracle in itself.

Thanks gang!

[HopeinTN]

My doc emailed me and says that the labs and in connection with the biopsy results, show that my disease is active. I will meet with him on 3/04 to discuss RTX treatments. I will research some posts on RTX as I have no idea what to expect. Will it make me feel as bad as the CTX did?

Oh well, let's get this party started and get me back on track.

Thanks gang!

[Pete]

I will research some posts on RTX as I have no idea what to expect. Will it make me feel as bad as the CTX did?

For most people, rtx infusions are almost a non-event. I had two back in October 2013 and was on the road driving to vacation getaways with no problems. When you arrive at the infusion center, you will probably first be given an IV dose of solumedrol followed by benadryl. Since I take claritin every day, they did not give me the benadryl. The first infusion will start very slowly. My first infusion lasted almost 5 hours. The second one lasted just under 4 as they were able to go faster since I had no reaction during the first one. You should probably take something to read and maybe something to snack on. The infusion center I go to at Ohio State has a private TV with many channels and the nurses gave out snacks (100 calorie packets of cookies) and water.

The nurses will take your vitals every 30 minutes. If you start to feel funny or have hives or shortness of breath, say so right away. They will stop the infusion and deal with your symptoms immediately. Once you're stabilized, they'll start again, only more slowly.

Most people on this forum have little or no reaction. I was a little tired for about 24 hours afterward, but I was able to do normal activities without difficulty.

I think one of the big concerns with rtx is the cost. The list price is between $15 and $20K. Since rtx is now a recognized treatment for wegs, your insurance company will probably pay for it. Between Medicare and my supplement, the two infusions cost me a total of $40 out of pocket. Genentech can also provide financial assistance if needed.

Good luck!!

[KimH]

I tolerated the RTX well. I was on CTX for about 8 months. A bit longer than I should have. I was approved by my insurance for four weekly treatments of RTX. I didn't get the benadryl because I am sensative to it but I did get 125 mg of solumedrol and 2 Tylenol. My bp did get a bit low but the nurse checked my vitals every 15 minutes and then every half hour. The first infusion is done very slowly to see how your body tolerates the drug. The rest do go faster. It does take a few months to kick in. I just had my last treatment on February 7. Other than a lung nodule my wegs is in my sinuses. I was not feeling too bad at the time of the treatment. I hope your doctor will get you started on the RTX so you can get some pain relief.

[HopeinTN]

Great info. I was on CTX for 25 months and in remission the last 4. Surely this will work. I have had a crazy reaction to Benadryl in the past so thanks for mentioning that so I can tell them. My Weg's is in my lung and compromised by Aggressive Fibromatosis. I have great insurance but a high deductible and out of pocket max. I think I may be close to meeting the out of pocket max of $3000.00 already. I usually hit it around April, but early this year. Maybe thsi means the insurance won't think twice about approving it.

Thanks guys.

[Alysia]

Hi Katrina,
I didn't have any reaction to rtx, but lowering of BP during the IV. it is doing miracles. please read this: http://www.wegeners-granulomatosis.com/forum/medication/3159-rtx-outcomes-my-list.html
good luck and please update us.

[marylz]

Hi. I had my 1st RTX infusion today and it went well. I actually slept through much of it due to the benedyrl they gave me.. I was there for about 5 hours and they came and checked my bp and general well-being every 20 min or so. After the sleepiness wore of, I felt fine. we will see what the nextfew days bring, I go on tuesdays for 3 more weeks and then get a break for 6 months. Good luck with your treatments- hopefully the docs will choose RTX.

[kieshara]

GEE i do actualy feel healthy if i read your story, that is so sad that you had to go through this. I do hope for a recover i do think of you here from the point of Africa. good luck Ellen

[HopeinTN]

Thanks again fro the good read. I see my doc tomorrow and put the treatment plan in place. Thanks for the good vibes.

[mishb]

Best of luck Katrina and I hope they get the meds right this time and you quickly find remission

[renidrag]

Good luck today Katrina.
Dale

[KimH]

Good luck today. How are you feeling today? Please let us know what plan you decide on. Be well!

[HopeinTN]

Rituxan it is! I start with two infusions and the first on 3/19 and the second on 4/02. My doc is head of the infusion center and picked tehse days so he could be there while I'm getting infused. It doesn't sound so bad, and I'll just hope for a quick and easy fix.

My birthday is April 2nd, so that kind of stinks but I'll look at it as a gift to myself!

Take care!

[KimH]

Good news! Anything that we do for ourselves that bring us to remission is the best present. The second infusion should not be as long as the first. Perhaps you could plan a celebration for the evening. So much to celebrate! I hope the RTX brings you relief quickly.

[annekat]

Great news, Katrina! I hope the RTX works better for you than anything so far, and puts you into a lasting remission.

[HopeinTN]

My first infusion was 3/19 and it went smoothly. I have another on 4/02. I was worn out that evening but my legs wouldn't stop jumping long enough to get any sleep. Other than that, I felt tired and beat. I was able to work thru the infusion and worked every day since.

I have noticed the pain in my lung (inflamation and fluid) is starting to slowly hurt more with every day and not sure what that's about but I want it to stop.

Thansk for all the love and concern! Happy Spring!

[renidrag]

Good vibes Katrina, hope all keeps going well
Dale

[mishb]

I'm glad the first infusion went well Katrina.

I don't really like the sound of your lung pain. I have no idea way it is happening so you probably should get it checked out.
Hopefully it's because the infusion is starting to do something good and reducing any mass inside the lungs.

Take care and I hope no.2 goes just as smoothly next week.

[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 :hug2:

[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.