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Mitomyocin Side Effect-lung damage

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

Interstital lung disease....anyone else have to experience this unpleasant side effect of chemo?  I have been done with treatment since April 1/13, alot of fatigue and shortness of breath - both chalked up to anemia.  Have been in the hospital since Saturday due to not just shortness of breath but an almost complete inability to breath.  ILD is what they have come up with, a "rare" side effect....a rare cancerYell 

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

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
Posts: 1134
Joined: Aug 2012

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.

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

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.

Marynb
Posts: 1134
Joined: Aug 2012

Rose, thanks for posting this. Very interesting and I did not know that mitomycin could cause lung damage either. Along with the pneumonia, I have had significant problems breathing since treatment. Some days I feel 100 years old, which is not like me. I don't think the doctors have considered this. I hope I don't have damage. I wonder how that would be diagnosed?

The fact that it is rare, makes it likely it would happen to me, or so it seems. I have now had 2 rare cancers. I hate to be pessimistic, but I need to consider all the possibilities to figure out what is going on. Thanks for the info.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

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!

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

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.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

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's picture
RoseC
Posts: 501
Joined: Jun 2011

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."

 

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

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.

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

Hi Rose,

You are always so helpful and everything you said above is true. But if she has Lymphedema, she needs decongestive therapy. It is different than Edema. I just "graduated" from Lymphedema Treatment where they taught me to manage my care.

Self massage taught by a certified Lymphedema Specialist who give the massages which are key to bringing down the swelling and breaking up tissue fibrosis, after which they specially ordered compression garments. The massage begins by compressing the stomach in a circular motion, much as I had learned in my Tai Chi exercises. Deep breathing, and a slow rythmical pumping motion which extends to the entire body. The idea is to create a vaccuum for the lymphatic fluids accumulating in the legs and stimulating the working lymph glands to compensate for the damaged nonfunctional glands. The tissue in my right calf was cadaver like from fibrosis. Most of the fibrosis which was also in my pelvis is broken up now but some remains. I wear compression garments from just below my breasts to my feet all day and all night. It seemed depressing at first but I feel so much better, it is fun to go to the gym, where I wear them during my workouts. The garments I wear at night are not as tight as the ones during the day. The Solaris garment helps massage the Lymphatic system while they are worn. The fabric is quite remarkable.

Evidently, they don't prescribe diuretics for lymphedema but lemons are a natural one that I love the taste of anyway. I use a lot of lemons in my cooking and on salads and in my iced tea (which is now half lemon).

Hope this was helpful. My last tx for stage 3 anal cancer was August 15, 2011. I also had multiple benign tumors removed adenexal in nature, one was ten centimeters. The tumors themselves can cause Lymphedema which they say is caused by "trauma." I guess all our bodies are different and what is traumatic for one may not be so much for another. I had cancer and a hysterectomy when I was 25 also.

The reason intercourse hurt so much was because of genital and pelvic lymphedema. I wouldn't have been diagnosed had I not wanted to turn back the clock so badly and have sex like the good old days. I am glad now I pursued on with the encouragement by Joanne. Early diagnosis of Lymphedema is key to management, just like cancer. They are both staged I, II, II, IV. No one wants to get too far down this Lymphedema road. It takes a long time to undo any fibrosis and we can become permanently disfigured or worse. Unlike our cancer, there is no cure for Lymphedema. It is chronic.

I don't think enough is being said about Female Genital Lymphedema here or in general. If a guy has it lymphedema you can see the enlarged scrotum, but it is harder to diagnose in women. As a direct result of these treatments I no longer have to drag my right leg, but still suffer from some intermittent groin pain in the right side that doesn't stop me from Zumba or kickboxing:-)

There is a good site, which is international called National Lymphedema Network. Much more is known about this in Europe and other parts of the world than here. They report in the USA the most training doctors have in Lymphedema is about four hours. We have to educate each other. This is a potentially deadly side effect from our illness and treatment. I don't much like the idea of disfigurement either. We need to encourage each other to seek out experts in cancer rehabilitative medicine before we have dire consequences. I have follow up care for Lymphedema every three months now.

Fondly

Sandy

 

 

 

 

 

Marynb
Posts: 1134
Joined: Aug 2012

Hi. You know, I would not let those symptoms go. I don't want to scare you, but a bloated abdomen was my first symptom of my second cancer. I actually have it again, almost 2 yrs. post abdominal surgery. That is one reason that I am having more tests. It is totally unrelated to what I eat. It sure isn't fun, but you absolutely have to see a doctor and do NOT let them tell you it is nothing. When I first got the bloated abdomen, years ago, I knew damn well something was terribly wrong. I had been thin and althletic all of my life. Doctor after doctor told me that it was part of growing older, etc. Wrong! I kept going to doctors, but as a working single mom, I was very busy and just kept pushing through all of the symptoms.....for years! See a doctor and see another doctor and another until you get an answer. A bloated abdomen could be a lot of things. You know your body. Good luck and hang in there!

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

thanks for your advice -- my thoughts exactly. First thing which came to mind was that, although it is only 8 weeks post radiation, it might be an indicator that the tumor is asserting itself.....however, given the 6 months timeline for possible regression, I am not in any panic to run 400 miles to MDAnderson to be told to wait another 2-4 months.....so am hanging in there looking for surgical GI oncologist closer to home---so you had anal cancer and then it returned 2 years after abdominal resection? I marvel at how people on this support site deal with everyday life and its variegated joys and disasters....

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

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. 

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

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.....   

Marynb
Posts: 1134
Joined: Aug 2012

That sounds really horrifying! I cannot even imagine being treated that way. My experience, with the exception of one post op nurse, was just the opposite. Every single person that I dealt with at the hospital was very respectful and caring! From the doormen to the doctors and everyone in between was professional and kind. I am sorry you had to be treated so poorly. I hope you let them know!

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

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

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

sorry you had a horrible experience.... i was treated by a totally different team of docs at MDA in 2009 before they learned to place the dilator inside vagina during radiation.... i told them over and over and over    to be sure TO GET EVERY FEMALE A DILATOR EARLY ON and to send every female to a gynecologist ... ( believe me i am not thinking that i am some great influence but they did ask me for a lot of suggestions to help others and i was loud and adament with those suggestions)..... all of us need the dialtor...there is no way that the radiation does not cause the tightness of the vagina... we need it not just for sexual reasons but to be open for pap smears and etc...especially since we had radiation to that area....i am sorry that no one expained this to you because i told them that i would just not have sex anymore (poor hubby) and that is when they said that  we need to keep the vagina open for natural cleansing and pap smears.... i did not know enough to research scans and etc... so just trusted them with getting them when they ordered them ...so i have had a lot of them...i am almost 4 years post tx... i do still have one PA with my colorectal surgeon who is cold and rude...but she is the only person who was not warm, considerate, kind,  ....  i guess they did not always inform me of everything but i did read the books, phamplets, that i was given.... my NP for the radiation team would answer his cell phone and and help me.... he is the best.... the lady in charge of radiation techs  changed my people working on me at the end so  i called him and told him that this was embarrassing to have new people seeing my privates...so he called her and they quickly gave me back my regulars...2 girls 1 guy....they always tried to keep me covered but as you know we were in a frog position so i just did it ....i did not see a Picc line video so this is new... I just let her do the insert and trusted her...then i went to a class on how to flush it and etc. but i let the nurses do that...i had been so misdiagnosed for almost a year by my proctologist in my area that i wanted to go where they had seen more of these cancers...so i trusted their judgement which maybe i should have been more on the ball with learning more but i had no one to talk to about this cancer at the time....i am so sorry that you suffered with this lack of respect  .... you should be able to find some really good docs to continue your follow up in san antonio being as more docs are aware of this anal cancer now....  i wish you well....  sephie

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i was terribly bloated at the end of tx at MDA ... i looked preganant and of course was not... they told me to walk around carefully ( i happened to be in the hospital at MDA  at the time due to almost no bld . pressure and infections...)   my picc line had already been removed so i had iv poles with multiple lines....what a mess....but i did walk around the unit as often as i could get up.... it finally went down.....they did also put compression socks on me....  sorry you are having all of this but i got tooooo sick to even go home and they put me in ER and then in hospital for 10 days....  i had 3 radiation tx left to do and they rollled me in on the bed and lay me in the forms each day to finish it....with all the iv's and everything.... it was crazy... but here i am at almost 4 years post tx.... i still hurt and still have issues but it is getting better......  sephie

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

thank you so much for your kind support to my post -- as there were so many I am replying with a universal thank you...I would have appreciated a delineation of side effects from all radiation and mitomycin and FU....and possible treatments. But did not get this. I think that they have a million pats now and are caught in an assembly line mentality shuttling record numbers through rather than people....I will followup on the lymphedema as a possibility although, theoretically, I had no lymph involvement but it is a t3....I saw a med oncologist locally and he brushed off all my complaints/ symptoms, and suggested a dietician consult, although I told him I have never used extra salt and started taking kelp last year for possible iodine deficiency.  I think somethink is beginning to grow again externally, so I will head back to MDA asap as they are the primo experts in SCCA in the world. Expertise is more important than bedside manner, and they are at the top of the heap. Thank you again.

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I am very sorry to hear this.  I had shortness of breath due to anemia but nothing else.  What will your treatment be?  Please keep us posted and I will be thinking of you.

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry to hear you are suffering with this. I would like to know more about this. I hope you have a quick recovery. Keep us posted.

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

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 

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

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.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

Great that steroids appear to be working.....theoretically lung tissue can regenerate (if not exposed to pollution, allergens, etc.), esp with exercise. I was put on steroids by MDAnderson but have not taken them. I was afraid of the steroids and chronic use and dependency. You have inspired me to use the meds, and hopefully my SOB will also resolve. I am just so tired of taking meds and meds and meds at the right time.....good luck and thanks for sharing your symptoms so that the rest of us can also benefit.

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