Lung GVHD by Any Other Name

As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.

Say it: Bronchiolitis Obliterans.

Wasn’t that fun?

I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.

I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.

Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.

Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.

I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.

Bronchiolitis Obliterans.

At least it’s still fun to say.

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12 Replies to “Lung GVHD by Any Other Name”

  1. ask your doctor if you can go on oral beclomethasone. The effects of the drug regimen are outlinted in a paper authored by Dr. Chien, June 2009, in BBMT. It’s a steroid, but isn’t absorbed as much in the body. The regimen includes lowering the dose of prednisone.

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    1. Thank you for the information. What a great site/resource: http://bmtt.org. I have found several useful articles by Dr. Chien but I am unable to locate the one you reference. Can you please provide a link to it? Also, are/have you or someone you know using/used the oral beclomethasone?

      Thanks again!

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    2. MH,
      I think I found the article you are referring to: http://www.nature.com/bmt/journal/v45/n2/full/bmt2009129a.html.

      From the abstract of the article, it looks like the oral beclomethasone is used as a prophylactic; unfortunately, I already have lung complications so I wonder if the article discusses any benefits from the drug for cases like mine (I don’t have full access to the article).

      I will certainly bring it up with my GVHD doc during my next appointment, though.

      Thanks again!

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  2. I am truly sorry to read of the new difficulties that you must face. Is there no end to what this disease can throw at you? I finally got a clear scan last week, an early Christmas present for sure. One thinks when they get to the end of the treatment train trip, you’ll get off just where you got on. But that’s never the case. You end up in a different place, never to be sure of your body again. I hope you have a treatment plan in place and that you will persevere despite the obstacles. Have you read “the emperor of all maladies”? Sincerely, Lynn PEI Canada

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  3. Hi Lynn,
    Thank you for your nice comments and words of encouragement. I really do appreciate them.

    I wonder what you are being treated for.

    You are right: it certainly has been an emotional roller coaster ride. Just when I thought I was coming to the end of one ride, I get placed directly onto another. However, I’m thankful to still be riding. :)

    I have not read THE EMPEROR OF ALL MALADIES but I’ve listened to and watched just about every interview the author has done (the best I think was his interview with Charlie Rose) and I’m looking forward to reading the book. Once I do I will certainly write about it here. It’s funny…up until TEOAM, I haven’t been interested in reading any other cancer books except Harvey Pekar’s OUR CANCER YEAR. And the only reason I think I was motivated to read Pekar’s book is because he is from Cleveland, near where I’m from, and it is a comic book. Anway, have you read TEOAM? If so, what are your thoughts?

    Thanks for visiting and I hope to hear from you again soon.

    Kurt

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  4. Kurt,
    It is nice to know you have not allowed this disease to keep you down, no matter what obstacles it throws your way! You are missed at work, and thought of often. Keep getting better and stronger!! I hope the new year brings lots of good news and positive outcomes for you and your family!

    Warmest regards,
    Tanya

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    1. Hi Tanya!
      It’s great to hear from you! Please let everyone at work know that they are greatly missed by me and also thought of often. I’m looking forward to seeing you and everyone and getting caught up on how you’re all doing.

      I hope you have a great year both personally and professionally.

      Take care Tanya,
      Kurt

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  5. I, too, have bo of the lungs. We had a friend from church that said “that stinks”! I had breast cancer, then 10 months later while pregnant found out I had AML–from breast cancer treatment. Immediately started chemo, fell into a coma, and almost died. During that time I lost my baby,….had to learn to walk again and to write my name! We adopted a beautiful baby from Vietnam in 2007, crossing major hurdles to do so, and when I got back, about 6 months later, was diagnosed with the BO. I am down to 33 percent lung function and am on Albuterol Sulfate and Pulmicort (which enables me to get a deep breath), Simvastinin, and Singulair. I’m now chasing after a 4 1/2 year old,…but it sure beats the alternative!
    I had my transplant April 12, 2003. What are your lung function test results if you don’t mind me asking? If you want, you can email me privately diane@bafflingmagic.com
    Thanks!
    Diane

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  6. Hello Diane.
    Thank you so much for sharing your story here. One could never understand or even come close to imagining what you have gone through these past years, but let me just say how encouraging and uplifting your display of strength, tenacity, and obvious positive outlook is for me, and I’m sure others, as well.

    Until I started on montelukast/singulair, my lung function was 46%, but it has improved at bit: the time before last it was 51% and the last time it was 49%. The positive trend has enabled me to drop my prednisone dosage down from 50 to 45 mg. Still waiting to see how I react to the new dosage. It’s always an experience, if nothing else. :)

    BTW, there is more gvhd discussion at my public facebook site https://www.facebook.com/pages/Kurt-Brindley/139776062742838. If you have a facebook account, it would be great if you would join us there to share your knowledge and experience. All you have to do is click on the link and then click the “like” button. If not, I look forward to hearing from you often here or anytime through email at kurt@bojiki.com

    Thanks again Diane. You truly are inspiring!
    -kurt

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