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.
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Maybe this drig could buy patients some time:
One drug, pirfenidone, is made by InterMune, which is based in Brisbane, Calif. It has already been approved in Europe, Canada and Japan. InterMune paid for the study. The drug fights the scarring process, but how it does so is not fully understood.
The other drug, nintedanib, is made by the German company Boehringer Ingelheim, which helped pay for the study. Dr. Brown, who took part in that study, said the drug was originally being developed to treat cancer, and was tested with the lung disease when researchers learned that lung fibrosis had some biological features in common with cancer.
My dad went through a similar situation. At 58 he was diagnosed with having germ cell cancer. It came on vet suddenly and had grown so large in his stomache that it was cutting off the blood flow to his legs. Five years earlier he had the unfortunate encounter of working with a doctor who told him the lump was nothing to worry about. In a span censor about 6 months he was diablo used and soon died from bleomycin lung toxicity.
He went to the hospital at the end of March of 2013 as he was having trouble breathing. They thought at first it was pneumonia. After further tests they found that his lungs were hardening and put him on a ventilator. Upon a family decision he opted to have a trachea put in since he was at the end of his week on the ventilator and couldn’t remain on it with it with the tube down his throat. We talked about care centers and how to help him but ultimately his lungs were so far gone that he wasn’t even able to breath on his own. On the evening of February 14, 2013 we made what has been the hardest decision my mother, sisters and me has had to make and we took him off the machine and let him pass.
My dad had been in the hospital a couple months earlier and was diagnosed with pneumonia. It makes me wonder if it was actually the bleomycin and if this could of been prevented. We were told that it is rare for people to reapond negatively to the drug and that he was part of the 1%. All I can think of is 1- why did that doctor 5 years ago tell him a lump near his stomache was nothing to be concerned about instead of insisting of taking care of it, and 2- was there a better treatment to put him through to kill the cancer?
My husband Stephen, 55, was diagnosed with stage 2 Hodgkin’s Lymphoma in October 2013. He had four regimens of ABVD chemotherapy and he had his last treatment 2-5-14. Within a week of his last treatment he began to be short of breath and notified his oncologist who referred him to a pulmonary oncologist. He put him on a fast acting antibiotic and home oxygen. Within five days he was unable to walk from room to room and I took him to the ER. This was the beginning of an eight week ICU hospital stay that ended when he made the decision to have himself removed from life support. His Hodgkin’s was in remission.
I am posting here mainly to help anyone who may be researching bleomycin toxicity prior to beginning treatment with the drug. During the eight weeks that Stephen was being treated the family and the doctor’s researched to try to find something that would help, but there really is not a treatment other than high doses of steroids. He had to have oxygen to survive, but it is the very worse thing for the pulmonary fibrosis caused by the bleomycin.. He had a pneumothorax in both lungs and had four chest tubes put in at different times. Over the last 2 weeks he was requiring 90 – 100% support from the ventilator. He couldn’t even be shifted in the bed without his sats dropping and there was no hope of him leaving his hospital room even to go down the hall to have a CT scan much less the hope of ever going home. He was getting bed sores from being in one position. He “almost” died on seven different occasions. The hardest part was he was very conscious so he was aware of everything that was happening.
I can remember the warnings about bleomycin prior to him starting his treatment and the risks were low…like 6-10% would have problems and only 1% would prove fatal. That may be true for younger patients, but in the research that I have done patients over 45 are at a much higher risk of developing problems. Even patients that survive the original toxicity can die later from having any kind of lung infection or viruses like the flu. They are at great risk afterwards for complications to anesthesia if they ever need it. I know that probably bleomycin has helped people with different kinds of cancer, but people need to know the real risk of problems with this drug.
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.
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
Bleomycin is vary dangerous drug if not used correctly
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.