My daughter received 6 cycles (12 treatments) of ABVD starting on 6/10/10. At the time her doctor told her wear a braclet/necklace stating taking bleomycin - NO SUPPLEMENTAL OXYGEN. I thought when her treatment was finished she could remove the bracelet, but we were told that she could not receive oxygen for the rest of her life. Apparently when oxygen is administered to someone who has received bleomycin there is a chance for pulmonar injury.
I spoke to a man 2 days ago who said he needed a stent in his arm. The doctors did it with a local because they did not want to give him oxygen , due to his prior history with bleomycin.
Yesterday my daughter needed a biopsy (her cancer has returned). I had requested mild sedation be given.. Thank god I was in the room and noticed they were giving her oxygen. When I mentioned the bleomycin , they removed the oxygen.
I do not know all the risk factors. I posted this question his a year ago no one mentioned that their doctors had even shared this information.
Please check it out yourself, just to be safe.
I'm sorry for your daughter's troubles. I hope this ends well for you both.
You are not the first to mention bleomycin in this group. I am due for my annual check next month. This is one I will definitely bring up with my oncologist. It was never mentioned during my whole treatment, and I think I need to know. I, and others, may be grateful to you for flagging this up.
My 19yo daughter has also been told that she will need to wear this ID for the rest of her life. Thankyou for telling us of your scare so I can be more aware for my daughter. All the best.
THANK YOU for this information
My husband was scheduled to have six cycles/12 treatments of ABVD starting last September. After the 6th treatment the Bleomycin was discontinued because of lung damage.
We received NO warning about the use of oxygen after his chemotherapy. Our next follow-up appointment is not until October... but this question will then be at the top of our list. ~ Joyce
Joyce,
Hi, can you tell me more about the symptoms of the lung damage so I can watch for same in my daughter please?
Your husband should wear the Medi Alert pendant or bracelet always now.
Good luck to you both for an uneventful healthy future.
Kim
Kim,
Half way through his chemo treatments John was constantly short of breath...couldn't take more than a step or two before he had to put his head down and rest. Stairs were out of the question, Also, the PFT test results were telling.
He was a french horn player in his youth, a graduate of Juilliard School of Music... so his lungs were very important. I expected he would need supplemental oxygen in the future, much like someone with emphysema.
Fortunately, there has been an improvement. Although I suspect he will never return to normal.
Since reading the alert I have continued to 'google' and search this topic. I'm sorry about your daughter's cancer. It must be so hard on you, as well.
Joyce
I am consistently stunned and appalled whenever I read that patients or caregivers were not told about the potential longterm pulmonary damage wrought by bleomycin. that drug's toxicity profile is well known in the medical community, its association with lung problems is in every physician's drug handbook.
over the years the Hodgkin's research community managed to remove a drug from one old regimen because it pretty much guaranteed sterility in patients and still deliver effective therapy, I can't imagine the bleomycin issue isn't somehow being addressed.
I am glad that some of you are responding to this. The more people that I speak with the more I realize that very few were informed of the concern for potential problems. Ross, as manager of this site maybe you could post something so that members will at lease pose this questions to their oncologist or at least reasearch it for themselves.
We have all been told SO many issues that could arise from either Chemo or radiation that I think they start to blend together and become a blur. I know I kept hearing "somewhere down the line...this or that could happen". I wanted to deal with the present and not worry right now about "down the line".
In the meantime we are still waiting on my daughters biopsy. The waiting is the hard part. I just want to get on with this and attack the cancer (for a 2nd time) & hope and pray that she does not have a hard time with this go round.
That’s not a bad idea. You know what would be ideal-- and I’ll pitch this to Vic-- would be a sort of introductory landing page here for Hodgkin’s (and frankly for the other groups as well, although looking at the list on the left, that’s a crushing amount of content to create), one that either delivers the basics of the disease, or communicates the collected wisdom of the group into a concise package, or both.
I know they’re working on a few new things right now for the site, but doesn’t it make sense to have a sort of intro/welcome page to the group that isn’t set up so that comments can be added, but rather is a fixed (but editable) page? I think that omitting a comments section on such a page would avoid a lengthy thread that would lead to important information getting buried 10 pages deep.
Mary Anne,
Yes your post was extremely important to all of us.
My husband received a ton of literature about each drug before starting the chemo. Frankly, at the time I just scanned, but today I read every word. A five page document from Chemocare, The Cleveland Clinic Cancer Center.
Yes, under side effects they listed lung problems including 'rarely pulmonary fibrosis' which is my husband's reaction.... but not once did they mention restricted future use of oxygen. One phrase I don't understand is...'There is a maximum lifetime dose of Bleomycin'.
Your suggestion about having more prominent information posted is spot on. I hope it will become a reality soon.
I am sorry that your daughter may have to face this a second time. I hope the biopsy is favorable. Please let us know.
Joyce
Ross,
Great idea. There's plenty of literature out there but most times it is general information. I received most of my info from this site. It addresses those issues that I was dealing with & it was nice to converse with people who actually went thru the same thing that my daughter is dealing with right now. I found it interesting how so many had differrent reactions to the same type of treatment (ABVD). My daughter had little to no nauseau, no discomfort and continued to work thru her 6 cycles of chemo. I have read accounts of those that did not have the same experience.
I have read the printouts regarding the drugs and like Joyce saw under Bleomycin "less likely" side effect of lung damage or inflammation. But nowhere did it reference that this could occur if given oxygen.
I like the idea of a introduction page also the collected wisdom of the group. I am in total agreement about the comments. If someone need further communication then they can correspond thru the discussion page.
Thanks
Receive the biopsy results and it is Hodgkins, again. I guess this is good news because it could have been a different type of caner. My daughter will receive IGEV while being hospitalized Monday thru Friday. A few chemo's , then pet scan, then stem cell transplant . She is amazingly positve, perhaps that she is special needs is a blessing.
Mary Anne:
So sorry to read this. Glad to hear she's staying positive. Is she scheduled for an allogenic transplant or autologous?
Ross
FYI, I just added an entry at lymphomainfo about bleomycin side effects that is largely about BPT, or bleomycin pulmonary toxicity.
My husband just finished ABVD a month ago and we were never told about not ever using supplemental oxygen. The oncologist did an overview of all the drugs with us but he said theee side effects of any one drug was outweighted by the end results. Frankly, we were so overwhelmed in the beginning we did not ask further.
Thank you for your post. I will ask at Mike's next appointment.
“The oncologist did an overview of all the drugs with us but he said theee side effects of any one drug was outweighted by the end results.”
This is arguably true— at least for the efficacy of ABVD against HL-- but here’s the rub:
Whether or not the ends justify the means is not up to the oncologist, it is up to the patient. That onc needs a refresher course in the powerful notion of informed consent.
Ross, I just read the information that you posted on lymphomainfo regarding Bleo and found it very informative. I was not aware of this site and I am sure I will use it as a reference often. Thanks
Ross,
I've just read the post on Bleomycin side effects, and it could explain a lot. I have pulmonary fibrosis, and it may be the bleomycin, as I didn't have it before. BUT I was over 40 when I had Hodgkins, had part of a lung lobe removed prior to chemo, had radiotherapy to my chest, had pneumonia as a child, suffer arthritis because of an immune problem (we think) and smoked heavily until 12 May 1991, when I quit. So I'm not sure if there are any boxes I didn't tick in the list of possible causal factors. The main thing for me is that had I not gone through the chemotherapy and radiotherapy, I would have died in 2002, making me feel blessed now, not cursed. I was not really given too much choice of cocktail by the oncologist, but was in no position to make any sort of decision that would have been better than his offer.
Would I have been better off without bleomycin? I have absolutely no idea. Had I taken AVD chemo - ABVD without the B - how would I have ended up? Dunno, never will. Had I been told at the outset that ABVD would get rid of of the cancer but leave me with certain pulmonary fibrosis, would I have gone through with it? Almost certainly. There are always new things found out about drugs in the longer term, not envisaged at the time of introduction. All drugs are poisons, chemotherapy drugs especially so, and we take them if we think the benefits will outweigh the risks. I remain positive on that point, despite the problems I have had.
This thing is a percentages game - of that, I am 100% certain. You have posted good information about the new treatment regimes for Hodgkins, and that will potentially help newer sufferers to avoid some of this collateral damage. But I would not like to think that fear of bleomycin may put someone off, to the detriment of their treatment. Hopefully, medicine will produce better markers to show who is most likely to be adversely affected in the longer term. But in the meantime, I am content to accept that, overall, the end result of my treatment has been beneficial. Which is why I am able to sit in my garden today, watching a mass ascent of balloons, albeit in marginal flying conditions, at the start of the Bristol Balloon Fiesta, rather pushing up the daisies - see http://www.flickr.com/photos/tonykilleen/6034327407/in/photostream/
One thing I will do as a result of this debate, though, is to ask my oncology guy about this at my next annual check up, which is due next week.I'll let you all know if anything comes out of that. In the meantime, the article you guided us to needs a bit of tidying up, unless BMT is another name for BPT (not a criticism, just a pointer for editing. There's a couple of other typos, but I truly value your information)..
Tony-
The acronyms start to pile up around here- BMT is a bone marrow transplant, clearly a typo, and I found three instances of it-- thanks for pointing that out. And while you weren’t critiquing it perse, I welcome any and all critiques, this is a work in progress just like modern medicine is a work in progress, trying to present the best information and the best-known evidence, but those are shifting grounds so things change all the time, meaning that critique is welcome. In other fields of writing I might have an ego, I have next to none here.
The argument you make in the post above is impossible to refute. bleomycin has been an integral part of the long-term survival of Hodgkin’s patients for decades now. and I don’t think anyone would weigh the notion of beating cancer with the possibility of consequential health problems in the future against not beating cancer and not being here in the future.
However, information such as the potential for BPT speaks to the notion of informed consent, and while making the decision to go through treatment for HL is easy for most because it generally affects young people only, the same mentality among oncologists-- to gloss over some information in an effort to get patients into treatment without screwing around with the ‘fine print’ is endemic in oncology. And yet for some cancers, for some people who are older, the difficulties of chemo aren’t worth it. Palliative care for lung cancer patients typically leads to longer survival, and a happier survival, than if they accept chemo.
And I don’t think the age or the cancer matters- informed consent should always apply, and it should always include an extended discussion with oncologists, not a 20 page hand-out followed by one’s signature on the last page.
This is one reason why I have such admiration for the German Hodgkin’s Study Group. Pretty much all they do, and have ever done, is to try to refine Hodgkin’s treatment, whittle it down until it delivers the maximum efficacy with the minimum long term adverse effects. very very few cancers can make this claim-- that treatment protocols are evolving this way. Most are still scrambling simply to keep patients alive.
Tony,
I think a reason to question your Doctor about the possible side effects of Bleomycin is to know how to handle situations that may arise in the future. I mentioned the bleomycin/oxygen complications to the doctors everytime I meet with a new one. What I have been told is that it is important for an anesthiologist to be made aware of the bleomycin. That way they can make an informed decision on what to use if oxygen is needed. I can't even begin to understand all of the possible sides from the different drugs my daughter has been given. She received 6 cycles( 12 treatments ) of ABVD, 13 radiation treatments & is now undergoing IGEV. Add to that all of the steroids & various other tests I can only assume something has to be compromised. I keep hearing "Down the LIne this or that could happen". I just want her to get thru "today " and have a wonderful, beautiful TOMORROW.