Mitomyocin Side Effect-lung damage

Hi - Sorry you're having to deal with this. What is the treatment? Is it a side effect from the mitomycin? I didn't have what you have, but I did have another rare side effect of mitomycin - TTP. While I was in the hospital with TTP, I had a lot of trouble breathing but it was diagnosed as a partially collapsed lung. Hope things get better real soon!

Marynb said:

Rose
What is TTP? I in the process of having cardiac function evaluated this week because I have had shortness of breath and extreme fatigue. I don't think it is my heartm but they are ruling things out. Last summer I got terribly sick and could not breathe at all. I was diagnosed with pneumonia. I have never really bounced back. I did not know the treatment could cause lung damage.

TTP is a blood disorder where the platelets stick together and cause shearing of the red blood cells. It can be detected by a blood test. The symptoms were pretty severe but did not include difficulty breathing (that came later, when I was in the hospital being treated for the TTP, and was caused by a partially collapsed lung - the breathing got better in a day or two with oxygen).

I didn't know the treatment could cause lung damage either. But I looked up side effects from mitomycin and yes, lung damage is listed as a very rare side effect.

BBdogs said:

Thanks

Thanks for your comments. 

My current treatment is big-dose steroids.  I have (added to the group) a pulmonologist now and follow up with him in a month for another pulmonary function test; best case scenario for that is the steroids have arrested the process and there is no further damage.  The damage done thusfar is supposedly irreversable. 

Taking a couple of days to cuss and kick things and then will begin to compile a lenghty list of questions for that appointment. 

On a good note, even though I am sure it is steroid induced, I have more energy than I have had in the last 3 months. 

Onward and upward - hurdles happen?!

Best wishes to all of you 

I love your spirit. Cussing and kicking things is totally ok (as long as it's not the dog you're kicking).

Yeah, unfortunately sometimes hurdles happen. After I finished chemo and radiation I thought - wow, I'm doing so well - back to work (part-time), resting, trying to be good - I'm through IT, I made it through IT - yeah, I'm kinda weak and tired but it's ALL OVER NOW (or so I thought) .....then the TTP hit me upside the head and knocked me into tomorrow.

But I'm back now, and things are so very much better.

I wish for you that nothing else hits you upside the head, that it gets no worse, and you have no more of being knocked into tomorrow.

RoseC said:

Hi NYinTX

Keep on doing anything you can for those 30 minutes or less that you're able to. That's more than I was able to do two months out of treatment. Thirty minutes may work itself up to 1 hour, then 2...and so on. The edema may resolve itself the more you move around.

I would recommend, if you haven't already, that you tell your doctors about it. They may prescribe a diuretic - although they did for me and it didn't help much. But every case is different.

Thanks...I love your cats. I had to give 2 of my barn cats back to Pets Alive while I stayed in Houston for 3 months, and couldnot find anyone to look after them at the time. Wish I had them now but afraid to adopt another pair as may have to travel back to Houston, may, who knows. Am looking for another GI Oncologist Surgeon in Austin, TX -- any recommendations out there?? -- as I do not want to travel back to MDAnderson. So for sure will relay all info on symptoms when I find someone.....dandelion tea/supplements/parsley/watermelon are all organic diuretics. I am eating half a watermelon every few days, or papayas, etc. but nothing is helping. And I cannot lose any weight no matter how little I eat, which is like such a low priority right now, but obesity at 175 lbs, up from a normal 140-145-150 max, makes it all so much worse. Can't even bend down from the bloated midrift....

RoseC said:

Thanks - I love kitties so.

Thanks - I love kitties so. Only the orange tabby is still with us. I wish I could have taken care of your cats while you were in Houston. But I'm way far away, near Boston. Pets Alive - never heard of them but they sound wonderful, just by their name.

I don't think the amount you're eating is the problem. Edema isn't normal weight - from what I understand it has to do with the fluid building up under the skin. But not food. It's more like your body is hurting and it's trying to compensate but can't (not necessarily 'can't', but 'can't right now'). In time it could though. I found this, hope it helps (although I'll bet you're already doing these things). Sorry I can't be of more help.

 

"Managing edema focuses on correcting the underlying cause of fluid buildup. Edema caused by medications or poor nutrition is reversible in some people. Edema caused by cancer or by kidney, heart, or liver problems may be more difficult to treat and may be permanent. The following suggestions may help reduce swelling and relieve symptoms:

 

• Ask your doctor about prescription diuretics (medications that eliminate excess fluid from the body by increasing urination).
• Eat a well-balanced diet.
• Reduce the amount of salt in your diet.
• Walk or do other exercises, which helps pump fluids back to your heart.
• Elevate the affected area when sitting or lying down.
• Avoid standing for long periods or sitting with your legs crossed.
• Wear compression stockings or elastic sleeves to help push fluids back into your circulation system.
• Do not reduce amount of water or other fluids you drink without consulting your doctor.
• Talk with your doctor about whether physical therapy or occupational therapy may be helpful."

 

I scrap all the "talk to your doctor" stuff,  as that has never panned out for me. Am looking for one next to me right now. I'll let you know what he/she says. Docs at MDAnderson were useless to talk to except for endocrinologist and one medical oncologist. So maybe I'll get lucky enough to locate one within 50 miles.

NYinTX said:

Help w/MD: >wt, lung damage, fatigue, bloating,

I finished radiation/chemo with one dose of mitomycin (second dose held because of << white blood count) on March 18, 2013 for t3n0m0  SCCA  at MDAnderson. I can barely walk now, have severe bloating, lower leg edema (socks leave a mark on leg), am always craving something to eat but > distended if I do, which I do anyway. Severe muscle pain and inflexibility, which I chalk up to lack of exercise, which I cannot really return to for > shortness of breath and exhaustion after 30 min. Am turning to gardening, planting, digging holes for trees, etc. as a substitute. Do not want to return to MDAnderson, 200 miles away, for a 6-8 week followup with GI Surgeon for anoscopy. Looking for someone closer to Austin, TX. Any recommendations?

Have refused repeat CAT scan at 6 weeks post radiation and basically am pretty disgusted at not being informed about all the detailed residual side effects from radiation/chemo......   not a single MD has provided cogent rationale for doing CAT scan 6 wks post radiation, and doing anoscopy 6 weeks after radiation.....tumors are supposed to take up to 6 months to regress if they are going to do so...so what's the point of doing any more testing before then as thre are no treatments to be done before the 6mos mark? The exhaustion and panting after mild exertion, and simply walking in food shopping is exhausting in itself. But what really has me worried is the 40 lbs I put on past year, and this horrible bloating. I look like I'm pregnant and I'm over 60  (   Any ideas on how to deal with these issues? Some more testing for residual lung damage due to Mitomycin? bloating as indicator that GI not working properly? and what have I discovered? Left over Oxycodon does away with the fatigue and enables me to function quasi normally, although I cannot ride my bike 100 miles or at all, or run at all....wow -what a way to get hooked on pain meds!

Bloating can signal many issues, one of them being obstruction.  Are you still having regular BM's?  A sure sign of possible obstruction is cessation of regular BM's.  Distention is one of the symptoms too.  Also, a 6-week post-treatment scan would be too soon from all I've read.  It's likely that your tumor is still being worked on by the radiation.  Anoscopy is recommended 8-12 weeks post-treatment.  I'm sorry your experience at MDA has not been a good one.  I guess this just demonstrates that even at the best facilities, some patients do not get the quality of care they expected. 

mp327 said:

NYinTX

Bloating can signal many issues, one of them being obstruction.  Are you still having regular BM's?  A sure sign of possible obstruction is cessation of regular BM's.  Distention is one of the symptoms too.  Also, a 6-week post-treatment scan would be too soon from all I've read.  It's likely that your tumor is still being worked on by the radiation.  Anoscopy is recommended 8-12 weeks post-treatment.  I'm sorry your experience at MDA has not been a good one.  I guess this just demonstrates that even at the best facilities, some patients do not get the quality of care they expected. 

no obstruction, regular BMs, much like rabbit dropping occasionally (round peas), and regular stuff at other times, but several times daily... I have to say that I had the same anal cancer experts which several other people on this site have mentioned (Minsky, Eng, Das - who coordinated my care but whom I never met). I felt that it was a machine conveyor belt - the NPs thrust packets of papers at me on my first day and said someting to the effect that I would have 38 days of radiation, etc....and to read the booklet on chem side effects; Big Pharma Aquaphor was pushed on me without any consideration as to alternatives or cost (I used yogurt and A&D, which has slightly greater % of petrolatum & lanolin and noting else)....Medical oncologist never did a physical exam but I was automatically shuttled to gyn and GI surgery without being asked or advised or given an explanation of why these were scheduled. I refused both and was given a real talking down to by the respective department nurses....they seemed to be personally affronted. I was not asked whether I wanted a vaginal dilator or not but it was shoved in and I was told I had to have it, which is totally incorrect, and "uninformed" consent....so I refused that and again a scene was made by the relevant departments. I acquiesced in the end but felt that I was being abused every time I was forced to use the vaginal dilator.....I have read all the posts on this site concerning other peoples experiences so I understand that it is really individualized. Point is that at no time was there an attempt a "informed consent" or cogent discussion as to need/ side effects. A really "hilarious" example of MDA "informed consent" is when a PICC nurse left me alone in a room to view a video on PICC insertion which wa mandated to be seen by pts before signing the consent form. However, this nurse did not know how to turn on the volume on the video and left me behind a closed door to look at a voiceless video. Needless io say I refused to have him insert a catheter into my vena cava....which also upset the apple cart. What was amazing is the defensive reaction of the supervising nurse who did not seem to think this behavior  strange or incompetent, or a violation of my rights to "informed consent"... minor I'm sure in given the big picture, but an indicator of a lot of little things piling up. Another person may not have made anything of this.  Needless to say, I was irate every time a tech or staff touched my body to push it into place without first asking me or telling me waht they wanted to do....just started pushing my legs into the radiation mold or tearing off tape markers, etc....I was on the verge of punching some of them out but restrained myself to a feeble "tell me what you want to do before doing it"......etc. etc. etc. etc.   But the radiation equipment and protocol is probably at the cutting edge in this rare form of cancer, so not many really know anything about it......so I am still waiting for one of these MDs to tell me why it is necessary to have a full body CAT scan 6 weeks after radiation end....or an anoscopy now....

the real reason is that probably I am almost 64 and scan radiation side effects, if any were to materialize, would probably take a while, so the risk at my age is justified by the amount of $$ the triple CAT scan would bring in at 6 weeks, 3 months, 6 months, 1 year, etc.....   

NYinTX said:

mp327

no obstruction, regular BMs, much like rabbit dropping occasionally (round peas), and regular stuff at other times, but several times daily... I have to say that I had the same anal cancer experts which several other people on this site have mentioned (Minsky, Eng, Das - who coordinated my care but whom I never met). I felt that it was a machine conveyor belt - the NPs thrust packets of papers at me on my first day and said someting to the effect that I would have 38 days of radiation, etc....and to read the booklet on chem side effects; Big Pharma Aquaphor was pushed on me without any consideration as to alternatives or cost (I used yogurt and A&D, which has slightly greater % of petrolatum & lanolin and noting else)....Medical oncologist never did a physical exam but I was automatically shuttled to gyn and GI surgery without being asked or advised or given an explanation of why these were scheduled. I refused both and was given a real talking down to by the respective department nurses....they seemed to be personally affronted. I was not asked whether I wanted a vaginal dilator or not but it was shoved in and I was told I had to have it, which is totally incorrect, and "uninformed" consent....so I refused that and again a scene was made by the relevant departments. I acquiesced in the end but felt that I was being abused every time I was forced to use the vaginal dilator.....I have read all the posts on this site concerning other peoples experiences so I understand that it is really individualized. Point is that at no time was there an attempt a "informed consent" or cogent discussion as to need/ side effects. A really "hilarious" example of MDA "informed consent" is when a PICC nurse left me alone in a room to view a video on PICC insertion which wa mandated to be seen by pts before signing the consent form. However, this nurse did not know how to turn on the volume on the video and left me behind a closed door to look at a voiceless video. Needless io say I refused to have him insert a catheter into my vena cava....which also upset the apple cart. What was amazing is the defensive reaction of the supervising nurse who did not seem to think this behavior  strange or incompetent, or a violation of my rights to "informed consent"... minor I'm sure in given the big picture, but an indicator of a lot of little things piling up. Another person may not have made anything of this.  Needless to say, I was irate every time a tech or staff touched my body to push it into place without first asking me or telling me waht they wanted to do....just started pushing my legs into the radiation mold or tearing off tape markers, etc....I was on the verge of punching some of them out but restrained myself to a feeble "tell me what you want to do before doing it"......etc. etc. etc. etc.   But the radiation equipment and protocol is probably at the cutting edge in this rare form of cancer, so not many really know anything about it......so I am still waiting for one of these MDs to tell me why it is necessary to have a full body CAT scan 6 weeks after radiation end....or an anoscopy now....

the real reason is that probably I am almost 64 and scan radiation side effects, if any were to materialize, would probably take a while, so the risk at my age is justified by the amount of $$ the triple CAT scan would bring in at 6 weeks, 3 months, 6 months, 1 year, etc.....   

I'm sorry your experience with MDA has been mostly bad.