Pulmonary Lung Fibrosis after BMT for Lymphoma?

survivorgirl · New User Joined: 28 Sep 2009 Posts: 1

Hello. I'm a Lymphoma survivor (Hodgkin's) who had a bone marrow transplant a few years ago. Shortly after treatment, I was diagnosed with Pulmonary Lung Fibrosis. Although my breathing issues have improved and I have lost weight, I'd like to really read about success stories of those who beat the odds. According to what I have read, it appears to be no cure for Pulmonary Lung Disease and it seems to be an often fatal disease. I admit this has scared me. I had not read about the long term effects and now I feel nervous. Anybody dealing with PLF and doing well?

ChemoMan

Hi survivorgirl

The problem you have is a side effect of the Bleomycin one of your Chemo drugs and if you received radiation as well this probably also contributed......that is providing you got ABVD for your Hodgkins. Don't worry it is not often fatal and the fact that you are recovering is a very good sign. Most fatalities occur due to the idiopathic types, and those caused by severe autoimmune diseases which yours is not. There are treatments available for this it would be best to go to a doctor for help. A google search will provide a wealth of information for you.

Good luck and congrats on being a survivor Very Happy

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Badri

Hi,

In contrast to your case, I was admitted to the Critical care with Congested lungs. 70% of the lungs was covered and I was unable to breathe properly. I used to feel breathlessness climbing stairs and felt tired most of the times. I had the symptoms for about two months.

After being in the hospital for 11 days and given medication for TB and Pneumonia. I was finally diagnosed with stage IV of NHL. In the first month when I had two rounds of Chemo, I was also treated for the lung congestion and at the end of the month the lungs were 90% clear and my oxygen saturation came back to 98% from a low of 40%. I was on the ventilator for a period of 18 days.

A month or two prior to being diagnosed my weight was 92 kgs and from there it dropped to a low of 65 kgs during the Chemo cycles.

Glad to say that though there is some fibrosis which shows up in the CT Scans, I am quite healthy and have resumed work last month after a gap of 10 months. I have the bi-monthly CT Scans as I am on the clinical trial of a Enzastaurin drug which would be the first that would prevent a relapse of Lymphoma.

The long term side effect that I am facing is Axonal Motor Sensory Neuropathy. The nerves of my hands and legs had become weak and I was finding it difficult to walk. It has improved a lot and hope in the coming few months I shouldnt have any of it.

I have come to the conclusion that I developed NHL due to improper breathing and hence less oxygen. This has prompted me to do yoga and pranayama exercises that would help take deep breaths with more oxygen.

Hope I have been of some help and would be glad to answer any specific questions that you may have.

I am sure that the worst is over for you and would advise that you stay positive.
_________________
Age : 44
Diffuse Large B cell Lymphoma
Stage 4
Finished Six cycles of R Chop 14 - 21st Jan '09
Officially in remission 9th February 2009
Remission confirmed 24th April 2009

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