I have a close friend who is looking for treatment for a “bleomycin lung injury” to a close family member. Bleomycin is one of the chemicals included in chemotherapy treatment for Hodgkins Lymphoma. The patient had 9 of 12 chemotherapy treatments for Hodgkins Lymphoma and the cancer was responding very well. It became evident about two months ago that the patient was suffering from lung damage, so his oncologist took him off the bleomycin component of his chemotherapy regimen in September.
Then a couple of weeks ago his lungs suddenly gave out and he was gasping for breath and had to be rushed to the hospital. He was placed on supplemental oxygen and has been taking steroids to counteract the effects of the bleomycin. His lungs seemed initially to be improving, but his body was under such extreme strain that they chose to intubate and put him on a ventilator to avoid a collapse of the heart or lungs from the sheer exhaustion of breathing. He’s been on the ventilator since then, but improvement of the lungs appears to have plateaued. There have been various other complications but they appear surmountable if the lungs improve. The core problem is bleomycin injury or bleomycin toxicity.
The patient is receiving care south of Boston. The primary MD on the case is a critical care doctor and pulmonary specialist. Moving to another facility is not an option (he’s too fragile) but current doctor is open to input from other providers.
Regina Holliday is a Washington, D.C., art teacher, artist, muralist, patient rights arts advocate, founder of the Walking Gallery and the Medical Advocacy Mural Project. She is a blogger at her Medical Advocacy Blog.
Regina,
I’m a head and neck surgeon, so I deal with a fair number of patients who have been treated with chemotherapy. Bleomycin is not typically one of the primary chemo-agents used for the patients I take care of, but I remember it well from my medical school and residency days. The reason I remember it so well is because of its very specific toxicity.
To that end, the term ‘toxicity’ in this case does not imply an excessive dosage, but rather the frequent complication that results from the medication. This is so much so, that Lance Armstrong was advised initially to take it for his metastatic testicular cancer, but elected to instead undergo surgery for both his brain and lung tumors because of the scarring effects of Bleomycin on the lungs. It would have meant a severe injury to his pulmonary capacity and his ability to cycle (esp at high altitudes, regardless of Epo use..). He clearly began experimenting with alternative therapies at that point.
One thought as a corollary – your friend’s provider could look at non-conventional therapies as part of his care. Steroids are a tried and true method to treat inflammation anywhere in the body, but it’s a pretty non-specific medication. It’s good that the lead physician involved is a pulmonary specialist but I think any recommendations from the oncologist would be helpful – since they often give Bleo, they often deal with the side effects and so may have some insights from their experience as to what can help. While I don’t know specific references off the top of my head, have them research the databases of ongoing clinical trials. Lastly, I heard of a patient with a rare condition who started a page on facebook for her particular issue. It was so rare that there were no significant studies on the topic. Once she went on fb, she connected with people from all over the world and eventually put together enough people to convince Mayo to write a grant and research the disease. I say this not to encourage a research study, but rather to see who else is out there in terms of patients and what may have worked for them. I did this recently for myself and found a blog that detailed patients’ experiences regarding a health issue I was dealing with.
Bleomycin is vary dangerous drug if not used correctly
Bleomycin is a unique antineoplastic antibiotic that is extremely useful in the treatment of several cancers and is a key part of the ABVD Hodgkins Disease chemo regimen. However, in approximately 10% of patients it can result in lung damage. This risk is increased in the older population, in patients receiving radiation and when given with certain other chemotherapies, but it seems to have a genetic cause and so can happen in almost anyone. This risk increases as the dose arises, but has been reported at low doses. While there are several types of bleo lung damage the most concerning is a progressive lung scarring, known as interstitial pulmonary fibronsis, which may not even begin until after the chemotherapy is completed and may increase for months. The diagnosis is generally made by xray and breathing tests in a patient who has received bleomycin, but sometimes a lung biopsy is needed. The only known therapy is high doses of steroids which need to be given for several months. Often when the steroids are decreased the disease may flare again, requiring an increase in steroid doses. High concentrations of oxygen may make the process worse and are generally to be avoided. While most patients with fibrosis improve, some have long term lung damage and a small group develop fatal lung injury. My hopes and prayers are with your friend…. it is a terrible curse to beat cancer and have to fight such a complication. jcs
My sister, a 32 year old non-smoker, who had been diagnosed with stage 2 Hodgkin’s, died of bleomycin toxicity after undergoing 6 months of treatment. When she developed shortness of breath almost a month after chemotherapy was finished, her oncologist was insistent that bleomycin toxicity could not be the cause. Therefore, multiple tests were ordered to find a non-existent cause for this problem. She went into the hospital talking and laughing, but within one week was intubated and put into an induced coma. A lung biopsy was performed, then a large-scale lung biopsy. In my opinion (in hindsight) these tests were the absolute worst thing that could have been done. Her lungs were injured from the medication and had she been left alone and treated with steroids only, perhaps her body could have had the chance to bounce back. She never had that chance. After five weeks in a coma she died. Not only did she have these biopsies, but she was pumped full of numerous antiobiotics to treat supposed mystery infections the doctors thought she might have had. I don’t think her system could possibly have cleared these things through her organs at the rate they were pumping them into her. At some point her heart started to race (tachycardia) and drugs were administered to bring her heart rate down. As time went on she needed more and more of these drugs. The after-effect of that was that her blood pressure would drop dangerously low. The first time it happened they asked us, her family if we wanted them to use paddles. Having only seen this done on tv it seemed rather violent. Once again, hindsight, the paddles seem preferable, as there isn’t the lasting effect of the side effects of the heart medications. My sister’s condition was only confirmed to have been drug induced pulmonary fibrosis via the autopsy of her heart and lungs that was done after she died. I truly hope your friend is luckier than my sister, and my family. My takeaway from all this was to nurture the body and give it every opportunity to bounce back on its own, without interfering with too many drugs, diagnostic tests or confusing the underlying issue with secondary issues. There is ultimately no cure for this situation as far as I know, so the best hope is that the body will bounce back. Best of luck to you.