I am new to hodgkins as well as these groups but don't know how to get good information anymore. I can't believe I thought that Hodgkins would be my biggest problem but Pulmonary Fibrosis seems the worse fate. My doctor used words like "pulmonary cripple"! I didn't understand what bleomycin toxicity was and certainly based on the incidence of it didn't think I'd be one affected by it. Has anyone else had this experience and what did you do?
Hi Tammy-
This issue has come up quite a few times in the last month or so, with talk of fibrosis, of whether or not now to get a medic alert bracelet regarding the problem, and more. I have no doubt those folks will be chiming in.
How much bleomycin did you get? Rather how many chemo cycles? ("pulmonary cripple" ... f88ked up choice of words).
Ross
I agree with the choice of words. Although I had no idea how bad not breathing can be. I had just finished my third chemo treatment which is technically the start of my second cycle when the toxicity hit me. I swear I spent the next week breathing like a rabbit. I was seeing stars and could hardly function. I just figured it was part of chemo so at least they took my symptoms seriously. I had one more round with the bleo and after that I saw the pulmonologist and it was over.
I hope to God that the pulmonary symptoms are over and this is as bad as it will ever get.
It’s sad when your 11 yr old son says “When will you be able to go up the stairs again, like you used to?”
I have too many kids and I am too young to be this way.
Tammy, I haven't heard of this. Is it a result of your chemo? Sorry you are dealing with this too.
According to my oncologist she says she has never had a pt with bleom
ycin toxicity. According to my pulmonologist it is "well studied" and the fact that it hit me after my first "cycle" of chemo was right on track. Lance Armstrong refused Bleo because of the risk and I wish I had been as well informed. I am seeing a new pulmonologist this week so we'll see what he says. I can't keep eating these steriods like candy. I'm turning into Uncle Fester! Not cute and worse yet coughing and short of breath!
Your oncologist said she has never had a problem with bleomycin toxicity? Aren't her patients lucky ... Allow me to quote from the Companion Handbook to the Chemotherapy Source Book, published in 1999, one of many sources I could quote from:
"Cardiac toxicity and pulmonary toxicity (my emphasis) from doxorubicin and bleomycin respectively are well known."
Additionally, included in the NCCN's clinical practice guidelines for Hodgkin's as an essential aspect of your work-up following diagnosis and prior to treatment are pulmonary function tests if they intend to give you ABVD or BEACOPP.
Ross