Bleomycin Lung Toxicity

[Botidmore]

Hello everybody my name is Bo Tidmore (34 years old). In October of 2006 I had a left orchiectomy and CT scans later found 1 slightly enlarged node near my left renal vein (measuring 1.6 x 1.86 I think). My wife and I talked to the radiologist and he recommended we talk to a chemotherapist and pick our poison. My wife wanted me to take the the chemo.

I just finished treatment June 30 2007 (3xBEP). Pretty rough stuff. Got the numb fingers and feet, ringing ears, and no hair. These things I can handle. My question to this group is has anyone had experience with bleomycin lung toxicity. This has got me really worried. After the first cycle I had developed a dry little cough. Told my doctor, he listened to my lungs and we marched on. After the second cycle, the cough was a little worse but we marched on. Its been several weeks since treatment 3 and non stop coughing (very dry). I went to a pulmonologist before chemo and had my lungs tested. My oncologist sent me back and there was some lung changes after chemo. The pulmonologist said there is probably some fibrosis and a CT confirmed this. He put me on steroids to control the cough. I'm on day four and still a little cough. Today I had to go and pick up a van load of computer monitors and thought I was going to pass out I was so out of breath. I'm really worried because I used to be very active. Can anyone share there experience with this or am I alone. Hopefully something encouraging!

[Mom]

Bo, take a look at posts by Russell's Mom (Sharon). Russell had bleo tox and just got a great report that this lungs are improving. My son had a similar experience to the extent that they stopped the bleo in round three. His PFT at one year post chemo showed 100% lung capacity and he is doing fine. Dianne

[Scott]

I'll have to let others share experiences with bleomycin, but I'm glad to welcome you to the forums, Bo. Congratulations on completing chemotherapy!

[mrb1980]

Bo,

Unfortunately I have quite a bit of experience with the effects of bleomycin on pulmonary function. After 4xBEP, a pulmonary function test indicated that my lungs were functioning at about 50-60% of pre-chemo levels. I had a constant cough, could not take deep breaths, and was chronically short of breath. CT scans and X-rays indicated extensive irritation of my lungs. In summary, it was just a miserable time.

My lungs slowly and imperceptibly began to improve and by about 3-4 months after my last chemo cycle were about back to normal. Now, 21 months post-chemo, I'm doing fine. I can't run up and down stairs anymore, but heck, I'm 50 years old.

In my case, it was just a matter of letting my body heal. My pulmonologist considered steroids but I had taken so many steroids during chemo that I vetoed the idea. I have a feeling that you'll do just fine.

[boyce]

It gets better

Bleo took a lot out of me as well. Very gradually you should regain better pulmonary function. My dr.s say i'll never get back to pre chemo levels, but will not notice a difference in everyday activity. At one point, I was unable to walk upstairs without having to lay down on the bed and rest (huffing and puffing).

You should see slight, slow, steady improvements as weeks go by

[Savin16]

Hi Bo, my brother did 4x's BEP. He developed a cough too. He had some effects on his lungs from the bleo, but in time it got better. For my brother, they tried a cough medicine, then an asthma inhaler, none helped. But you will gradually get better, along with the numb fingers and toes and all that other S*$T that comes with this horrible disease, but your on the road to recovery, so best of luck.

[Botidmore]

Thank you all so much for feedback!

I'd like to thank everybody for the reassuring comments. You know its kind of funny. The two times I've actually been told that I had cancer I never really became very anxious however, the side effects cause me to worry about becoming "Different than I was". It sure feels good to talk to people who have been through this. I don't talk much about it to family and friends. Although they have been very supportive and concerned, I just didn't want to complain all of the time. So mostly throughout the chemo I didn't answer all of the phone calls I was receiving. I was just very listless. Especially during those 5 hour 5 day sessions. I am I every glad thats over!!!

[Russell's Mom]

Hi, I'm at work right now, just wanted to let you know I saw your concern. Let me know if you have questions!! Sharon

[sldl1106]

Hi Bo -

My husband just finished 3xBEP and 1xEP three weeks ago yesterday - they dropped the Bleo for the last round because his PFT showed lung function was down 24%. They won't use Bleo if you drop down 25% and his doctor said, let's just stop now. Rob has what we jokingly call "chlorine lung" - I don't know if anyone else remembers - when you were little and stayed in the pool all day, if you took a deep breath you would have to cough, you couldn't draw it in as much as usual.

So he has that, and he had a much worse cough three weeks ago, dry and annoying (to him, not me!). It's subsided quite a bit but he still has the "chlorine lung" thing. They gave him a spirometer to get ready for surgery in two weeks and I hope that may actually help him strengthen his lungs a bit.

Time heals it all, I suppose. We'll just wait and see.

[Russell's Mom]

SLD, Has your husband seen a Pulmonologist? He should be evaluated by special CTs (high resolution) and as well the Pulmonary specialist! I don't mean to scare you, but I would call right away. The toxicity is nothing to take lightly! Russell's Oncologist and the Pulmonologist are working together! Keep in touch, Sharon

[sldl1106]

Sharon -

No, he hasn't seen a pulmonologist, but nothing was mentioned to us. How much was Russell's lung function down by? Or does that not necessarily play a role in bleo toxicity? I'm not sure what to look out for; Rob's cough is gone for the most part but he gets out of breath if he does anything laborious (like changing my tire yesterday).

Thanks for your help.

[Russell's Mom]

The toxicity can be a very serious concern. It is good that the cough is gone, but concerning that the shortness of breath is still there. The lung concern "should" be covered by a specialist in my mind. Bleo tox is usually treated right away with steroids. If it were me I would be asking some big questions. I am not trying to scare you, but the damage can be permanent. Possibly there is something else going on, but you should know exactly one way or the other. I will try to find info on the internet for you. Get assertive!!! Sharon

[Russell's Mom]

Hope these documents work....still have skills to learn on the computer. Sharon
PS Scroll down on the first page...I deleted the first part of the page. I double checked them...was able to read by review print option. Let me know how it goes and I will try to improve my skills if needed.