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September 22, 2014 at 12:07 am #22177
My brother, Matt, goes in to MD Anderson this week for his first round of treatment in a 10mg Yervoy trial. He is extremely nervous about the pulmonary function test. When he took one here in Indianapolis three weeks ago, he scored a 73. He would need a 75 to qualify for the trial at MD Anderson.
We’re talking about a 43-year-old guy who, six weeks ago, could walk 18 holes of golf. So we’re a little concerned that he did something the first time he took the test that queered the results.
In any event, we would really appreciate ANY information regarding pulmonary function tests and what could be done to maximize performance? It’s scheduled for 8 a.m. Wednesday. Should you not take pain medication that day? Should you make sure you’ve been up for a few hours and walking around? Are they focusing on lung capacity, lung strength, or oxygen level, or what?
Again, any help would be much appreciated! Thanks so much!
–MasonSeptember 22, 2014 at 12:24 am #65453Celeste MorrisParticipant
These tests basically measure how much air you breath in and out under specific circumstances. Here’s a good link explaining it…. http://www.nlm.nih.gov/medlineplus/ency/article/003853.htm ” class=”bbcode_url”> http://www.nlm.nih.gov/medlineplus/ency/article/003853.htm
Hope that helps and I wish your brother my best. CelesteSeptember 22, 2014 at 12:34 am #65454
Awesome! Thanks, Celeste. That helps!September 22, 2014 at 2:17 am #65455 I wonder if picking up an “incentive spirometer” at a pharmacy or medical supply store and using it regularly for the next couple of days might help? On a few extended hospital stays, particularly during IL-2 and TIL, but even after non-pulmonary surgeries that involved anesthesia, I was given one to use regularly (I think I have a couple in the closet still). I had no pulmonary issues before, during, or after, but was always told by the nurses that it was a way to basically exercise my lungs and keep them in shape to prevent any issues from arising. There were points where it was suggested to use it every hour or two, if I recall correctly. Not painful or difficult, more an annoying thing to remember to do (but I was a good patient and kept up with it). Just a thought…
JoeSeptember 22, 2014 at 12:00 pm #65456Catherine PooleKeymaster
Just on the conservative view, this pulmonary function requirement is for a reason. As mentioned the subsequent treatment of the TIL trial can be quite hard on the body and that is why at NCI they have even stricter guidelines for entry. If your brother isn’t qualifying, then maybe he should consider a lower dose of IPI with the goal of getting the anti-pd1 (so far the most promising therapy for melanoma) that is approved and proven in large numbers. Or possibly the trial of IPI/PD1.
Just a thought that it is never too late to change course. Hope all goes well.September 22, 2014 at 1:47 pm #65457EvaSaraParticipant
I don’t have melanoma but I have had major lung surgery for other reasons and before that a history of recurring pneumonia. A simple tool for training your lungs is a bottle half-filled with water and a plastic tube (1/2 cm wide) to breath into the water. Basically it means “blowing bubbles” in the water, which creates some resistance for your lungs and makes them stronger. This can be combined with a technique to use the abdominal muscles to exhale, like saying huh! slowly, which pushes the air out of the lungs.
I think that it makes sense to train your lungs if you spend some time without being active and especially if you are lying down a big part of the time. I looked up the “incentive spirometer” and it is probably also a useful tool.September 22, 2014 at 6:27 pm #65458
Catherine makes a good point here worth considering. I believe you wrote that the first part of Matt’s treatment is going to be Yervoy (ipi) plus biochemo, which will include IL-2. From what I read of the MDA protocol for this trial, the IL-2 will be given in the standard high-dose IL-2 protocol, which means a bottle/bag given as a “bolus IV” every 8 hours for up to 15 doses, where each bolus takes about 20-30 minutes. This will then be repeated every few weeks in conjunction with the Yervoy for this trial. IL-2 will be given inpatient and means up to about a week in the hospital for each round. It is tough on many systems of the body and it is extremely rare for anyone to make it to all 15 doses… in my three rounds, I did 7, 8, and then 9 doses, which I was told is average. There are no hard numbers correlating a response to the number of doses, but a general understanding is that more doses increases the likelihood of a response. It’s possible for someone to get a single dose and respond and another to go all 15 and not respond, everyone will be different, but again, in general, the more the better.
The side effects of IL-2 get worse every dose, I could spend paragraphs explaining them, but there are a lot of possibilities. It’s one of the few things I’ve ever heard of where they basically say going in that they’re going to give you as much of it as they can, until the body shows signs it can’t take any more. I found that at NIH they were very good at monitoring the side effects, and managing them where possible, but it gets to a point where one or more side effects will be unmanageable to the point where safety is an issue at which point they may skip a dose and then stop dosing entirely. For me it was diarrhea the first round, low BP the next, and fever and low O2 the last time. I don’t know what is causing Matt’s reduced pulmonary function (I’m sorry, I think you wrote before that he has one or more small lung mets right now), but it would be a shame if he had to stop dosing early because of the combined impact of IL-2 on his already diminished lung function. Long term, for me, all of the side effects were acute and resolved on their own within hours to a few days of the last dose — sometimes with help, e.g. Imodium and tincture of opium for the diarrhea, Lasix for fluid retention (I gained, retained, and lost 25 pounds of fluid over 6 days during each round). But again, I’d hate to see more serious complications for Matt from IL-2 because of his pulmonary issues. I’m sure MDA is thinking the same. I don’t want to overstate or understate IL-2, again everyone will react differently. I made it through the doses I made it to, I don’t regret it, I felt that NIH was very experienced (as will MDA) at managing the side effects and knowing when to stop, and I never needed to be admitted to the ICU (which is a possibility, although becoming less frequently needed). But it’s also the one of the toughest things I’ve ever had to do, certainly tougher than any treatment or procedure I’ve gone through for melanoma.
I do think the spirometer would help his lung function in general and he’ll almost certainly be given one to use regularly during IL-2 dosing, regardless of how strong his lungs are at the beginning. The question is how comfortable everyone feels going into the treatment knowing that his pulmonary function is already reduced somewhat, even if he is able to pass the test.
I know you’re all processing a lot of information in a short amount of time and it can be overwhelming. Hang in there — Matt and your family will be in my prayers.
JoeSeptember 23, 2014 at 3:04 am #65459
Hey guys, thanks so much for the detailed and considered responses! The tests for entry start tomorrow, so we’ll have to see how that goes. He’s in great hands, so we’ll get the best possible result one way or another.September 23, 2014 at 11:48 am #65460Catherine PooleKeymaster Consider us part of your team. We are all hoping for the best possible outcome and Matt is lucky to have you looking out for his best interests. This is what helps most, beyond the medical caregivers are the friends and family members by your side. Let us know how things go.September 23, 2014 at 2:15 pm #65461 Wishing Matt, your family, and the entire TeamMatt the best as he goes through the tests and evaluations and makes treatment decisions with the doctors at MDA. You’ve done your homework and no matter how the tests go, there are a number of options for Matt, and he has a strong support team around him.
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