Mitomyocin Side Effect-lung damage

sephie

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!

ny in tx..... bloating

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

sandysp

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."

 

decongestive therapy

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

 

 

 

 

 

NYinTX

sephie said:

ny in tx..... bloating

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

to all with support for bloating

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.

NYinTX

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 

BBDogs side effects

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.