Susanbanthony

Oh, two more thoughts...

I also take green tea supplements ("six green tea a day keep the doctor away") ha ha... but they aren't for diarrhea, just for general after cancer immunity... and I used to take fish oil, but the fish oil gave me more diarrhea if I took the recommended dosage.  So, now, with permission from my docs, (the oncologist, my family practitioner,  and the naturopath doc) I now take Permeability Factor (which has vit. E in it, but not as much and loads of other things that keep my gastrointestinal tract very healthy.  The permeability Factor has made the MOST difference with 8 Immodium a day.

Also, I take the CHEWABLE immodium with simethicone. Advanced Immodium (which is unfortunately more expensive) also has simethicone which controls gas. I can carry the chewable tablets in my pocket. I NEVER leave home without them (and I'm "out" everyday several times). I run a part time business (that is flexible), and I lead an active life. However...  If I start getting stomach cramps when I'm 'out' (or at the theatre, a movie, playing cards with friends, out to dinner, etc.) I just pop one or two MORE Immodium in my mouth (more than 8 a day). It works 99% of the time.  (the other 1%, I just find the restroom).  Your friends and family won't care... and no one else matters.

Good luck.

Susan B.

I'm a 64 year old woman four years post rectal cancer diagnosis (unknown stage, but suspected as 2 or 3, also downstaged after surgery to Dukes II (stage one, second half), and I've had to deal with the same things as you describe, as well as proctitis and chronic (but intermittent, not all the time) pain. There were days I was very discouraged, however, it DOES GET BETTER with knowledgable doctors and complementary therapy and a good attitude and supplements.  I am lucky!! I go to a hospital where the doctors work with naturopaths during and after treatment to help with side effects.  AND I am able to  live an almost normal life. I say "almost normal" because there are still setbacks, but they are much less infrequent lately.

 1.Ask your doctor first, but don't be afraid to take Immodium BEFORE you have a problem.  It has very few side effects and it helps your sphinxter muscle contract more effectively as well as curbing diarrhea or lose stools. My doc said (from the very beginning) to take some before bedtime even and that helps prevent problems the next morning.  I didn't want to do that, but when I tried it, it worked for me. I'd think this would be a good strategy if you want to work (although if you seek disability that must be YOUR decision, but even if you do, you don't want to spend all your time in the bathroom, do you...).

2. You can take more than the recommended dosage of Immodium.  I've been taking 8 tablets a day.  2 before bedtime, 2 before breakfast, 2 before lunch and two before dinner. I eat a big breakfast, but I keep lunch very light if I'm going out in the afternoon. I also don't eat very large meals, I try to keep them small, but eat more in the evening if I'm not going out.  I'm not losing weight, I'm fine, I just manage my meals differently. Maybe that would work for you, or maybe another schedule would help you, too.

3. I take probiotics, and have since my surgery. The latest one that works best for me is lactobacillis oncogenes (recommended by a naturopath who works with my oncologist at a cancer hospital).

4. I eat lots of yogurt,(which is also probiotic) and I eat oatmeal almost everyday for breakfast. I peel the skin off of fruit and vegetables sometimes (especially if I know that I will have a really busy activity packed day the next day). I keep protein low in volume but eat some at almost every meal. Just a little but often...

5. I take a supplement that was recommended to me the same  naturopathic doctor who works with my oncologist (and is knowledgable about rectal cancer side effects).  The one that really helps the digestive tract is called Permeability Factor. and it has many substances in it. It's for gastrointestinal health! It is expensive but worth it!! Another one is SAT (silimarin, artichoke, and tumeric). but I think that's just one that helps to keep me healthy in general, not just my gastrointestinal tract.

6. My husband bought me a bidet (like they have in Europe) to keep myself very clean.  It is a wonderful thing when I get diarrhea (or just when I have to sit on the toilet often).

7. Speaking of "sitting", you mentioned that you sometimes have to sit half the day.  I've also found that if I get up and then come back (if I have to do so), it works better than if I sit and sit and sit without getting up. Ny surgeion told me NOT TO STRAIN.  And getting up lessens the pain, so even if the urge is there, try NOT to strain. When I used to strain, it would give me more pain and the urge increased. If I get up (even if I have to come back again and again) the urge eventually goes away if i don't strain when I'm sitting.

After several years since surgery I am able to swim six days a week. And I've always tried to get lots of exercise (it helps the pain to go away, funny as that sounds). I walk two to four miles a day, travel extensively (now that I'm retired I don't want to stay home all the time, and I started three months after my surgery by going on a cruise where I went kayaking four times and scuba diving, once in the Carribean with my grandchildren.), and I just try to keep moving every day. In the beginning I just wouldn't eat until nighttime so I could travel, but now I eat in the morning and at night (with just a small snack at lunchtime). The pain and the urge are kept to a minimum, and the diarrhea is gone now with eight Immodium a day.  (I just went for a check-up and CT scan this week. The nurse there told me that some patients with rectal cancer take up to 12 tablets of Immodium a day, and that's OK as an upper limit.  So ask your doc and your nurses about that.  I guess "whatever works"... you must do it. Don't give up! keep trying to find ways to live your life. I can't answer if you should go for disabilty or not, but I'd say GO FOR LIVING either way. I'm even starting to be able to go out for lunch with friends (but I'm careful what I eat.).

The last two years I traveled to Europe for the first time.  Two years ago I traveled to Finland, Norway and Sweden with my cousin.  She was worried I would not be able to eat, but breakfast and dinner worked just fine (a snack bar was lunch).  Last year I went to Spain (and three other countries on another cruise with two other grandchildren who graduated from HS).  We traveled on the train, went to Art museums  (they have bathrooms on trains :-) and by plane and boat.  It worked. Just don't give up!!! And I was able to work full time during my treatment (but then I retired so I could "play" a little before I get too old, and or die). Have fun and email me back privately if you want any more ideas. I have quite a few but didn't want to bore you with more.

Live, love and laugh, I always say!

Susan B (as in Susan B. Anthony who once said "Nothing is impossible".

I like to think that nothing is impossible for us cancer survivors, too, even if it's MORE TROUBLE sometimes.  :-) Keep up your spirits and don't get discouraged.  Remember, side effects are better than the alternative (dying).

On 6/4/2009 cathyt wrote:

 

On 6/1/2009 Tumbleweed2 wrote:

Hi All;

Well I feel like I am at a crossroad here and looking to some of you other warriors for advice.  Reading about the after affects of treatment is one thing, but living it is another.  I was orignally diagnosed with Stage 3 rectal cancer in December 06 at the age of 43 (after surgery it was downgraded to Stage 1).  Had the usual 6 weeks neoadjuvant radiation and chemo; one botched LAR attempt in May 2007 (opened me, closed me up and referred me to another hosptial); LAR with complete hysterectomy and removal of 2 inches of vagina in June 2007, ileostomy reversal in November 2007, and completed 8 of the recommended 12 FOLFOX treatments in December 2007 but had to quit due to low blood counts and the neuropathy. I returned to work pretty much fulltime in January 2008.

Like most of you I have serious issues with diarrhea, painful cramping, bloating, gas, constipation, and multiple bowel movements over a short period of time; or long stretches of sitting on the toilet due to the urge.  Well everyday is an experience because you never know what to expect.  I take immodium daily, have modified my diet several times, have tried to take Metamucil to bulk up the stool but it causes serious gas, pain and bloating.  So anyway over the course of the last year and a half I have tried to work as much as possible, but have had to take about 80 hours of unpaid time off this past year.  The problem is my employer is not going to allow this any longer.  I get one paid sick day a month, however I typically have at least one really bad day per week.  So I have dragged myself into work and basically sat on the toilet half the day, but have been so exhausted that I end up even more anxious.  I really thought over time that things would improve, but have found over the last 1 1/2 years that although things are somewhat better they are far from normal.  My husband is very supportive, however when I try to talk about my issues with my Mom she is basically like "suck it up and carry on" which I feel like I have done.  I am not a complainer nor am I looking for sympathy.  As best as I can I try to carry on as normal as possible and I am glad to be alive.  I enjoy the good days when I have them.

My question is has anyone had success in applying for and receiving Social Securiy Disability due to side effects from rectal cancer treatment?  This is not something I am thrilled about, but it may be an option.  Originally back in 2007 I had to apply for Social Security Disability to continue receiving my short term disability benefits provided by my employer.  It was just a formality really because I always intended to return to work fulltime.  The SSI application is valid until December of 2009 (the 2 year waiting period) so now I am wondering if I should go ahead and try to pursue benefits so that I don't have to reapply and have another 2 year waiting period.  Any thoughts or information would be greatly appreciated.

Chris

Sorry to hear your going thru this, I can relate my husband was diagnosed with rectal /bone cancer last yr (reoccurance from Colon cancer 18 yrs ago) go to dr and tell him all your symptoms and he will write you note to retire you (we are in Ca.) hope your state is same as Ca. laws but if Dr says you can't work you will qualify for Long term disability or Early Social Security, he got his right away there is no way he can do his work, there should be laws with medical facilities that guide you thru what your deserve to get. I have to admit Kaiser gave us all the information thru Home health care unit to guide us thru.  God Bless and I pray for your recovery!  quest. please fill free to ask going thru same things & my husband tried all like you with medications. Take care hope this helped.

Does your mother have insurance?  If she does, you might want to contact the Cancer Treatment Centers of America, abbreviated as CTCA, which is a private, but WONDERFUL hospital. They have FOUR regional centers around the USA.  One is near Chicago, one near Philadelphia, PA, one in the south (I think it's in Oklahoma) and one in the northwest  near Seattle, WA (this one is a small center). Also, they are building one in Phoenix, AZ 

I live in Pennsylvania, but I go to the center in Chicago and have for three years.  I have been treated for the same type of cancer your mother has, and they are wonderful,and they do check-ups as well.  They have a full staff that provides for the WHOLE person, not just treating the cancer problems.   They provide nutritional advise, as well as have nathuropaths who work with the doctors doctors to prescribe medications and nutritional supplements that help with side effects (as well as contributing to prevention of the return of the cancer), acupuncturists who can help with pain issues, as well as chiropractors.  They fly you IN and back home, and allow one caregiver to go with the patient for the first consultation.  These are FREE FLIGHTS and they pick you up at the airport in a limocene and excort you to your motel and they have vans which go every half hour or so to get you to the hospital for your appointments. You do need to pay for a motel during your stay there (which is only a day or two each time you go, but perhaps a few more days the first time you go.)  I would not go anywhere else because their treatment is so outstanding. I do have an oncologist at home who works with the doctors there in between my visits to CTCA.  Now I go only once a year for check-ups, but previously I had many more appts. I did not go there to begin with but when one of my tests came out funny less than a year after my surgery, radiation and chemo, I needed a second opinion and so I went there because of their holistic attitude (wonderful conventional/regular treatment as WELL AS treating the WHOLE person, considering nutritional needs, side effects, recommending supplements, serving organic food in the cafeteria, etc....).

I'm sure they could figure out how to help the pain your mother is having.  Sounds like there is something more that she needs that she's not getting from her current doctors. Give them a call... the number is 800-268-0786 You can call them anytime to discuss your treatment options 24 hours a day, or you can chat with them online.  I called them when I was looking for a second opinion, and I could not believe how thorough they are, and how easy it was to arrange to go there for a second opinion and for treatment.  The website is: http://http://wwwcancertreatmentcenter.com

If you read the information on their website you'll see what I mean...

Susan (patient at CTCA, a survivor in remission for almost 4 years now)

And feel free to ask me any questions you have. The rectal form of colorectal cancer can be a challenge, that's very true, but it doesn't have to ruin one's live!!

'Folfox: The "ox" stands for oxilaplatin as part of the treatment, as well as the 5FU.

 Xelox is Xeloda plus oxilaplatin. Not sure of the spelling, but it's pretty close...

I am a rectal cancer survivor and one of the first patients in my city to take Xeloda. I loved it! I never had any severe side effects except diarrhea (and that may have been mostly from the radiation) except it was probably from both because later (after surgery) I took Xeloda again for five months and I did get some diarrhea.  Since the doctors hadn't had much experience, they didn't give me any medication for nausea ahead of time, and guess what, I was never nauseated. I sent on two trips (week-end trips) during my chemo radiation, and as a precaution, my doctors wrote me prescriptions for mediation to reduce nausea, and diarrhea.  Funny thing... I never had side effects bad enough (even the diarrhea) to use ANY of the pills. So you might have your mother avoid lots of medication to cure side effects (like nausea) until she actually GETS the side effect.

I'm anti-lots-of-medication (because every medication has side effects, and I'd sometimes rather have the problem caused by the chemotherapy than additional side effects from medication taken to solve a chemo side effect. (it gets compounded as then one has the original side effect from time to time even the medication 'solves' it... and you nave the additional side effects from the treatment of the original side effect.  It can go on forever until you are taking ten or twelve medications in the end.  I took the chemotherapy, radiation and a little immodium (as little as possible). I felt FINE the whole time except for being more tired than usual, and not having as good an appetite.  But not in pain, or feeling awful. As I look back, I think it was because I took as FEW pills as possible.  Just those necessary to treat the cancer, and when I had severe diarrhea, I took Immodium. That's all...

I never had anything above level 1 hand-foot syndrome, and most of the time I didn't even have that.  I was never nauseated at all, but some food didn't taste good to me so I avoided the foods that didn't appeal to me.

Have you tried salad and whole grains to prevent the constipation? Also, fruit juice, and fresh fruit? I had rectal cancer and sometimes I get constipation (after the initial diarrhea from the chemotherapy and radiation) BUT usually eating well overcomes that problem especially now that the chemotherapy is over.  The current problem I have (which I conquer with Immodium) is that if I eat TOO many whole grains, or TOO MUCH fruit or salad, then I get diarrhea with that. It's a constant balancing act to figure out exactly what I need to eat to keep the diarrhea and constipation in balance.  I also have proctitis and neuropathy from the presurgery radiation which causes me pain with either diarrhea OR constipation.

However, the glass is always "half full" not "half empty" in my opinion.  After all, it's WAY better than the alternative (death). :-) I don't believe in strong pain killers, so I walk (exercise reduces the pain) and play with my dog who makes me laugh. He's prescribed by my family physician for lowering my blood pressure and for relief of pain.  It works... anyone reading this might try getting a dog if they have chronic pain.

You must stay positive. Negative thoughts always make you feel worse. It's the life you have, and LIFE is GOOD!

Susan 

Please don't stress... because here is another way to think about your father's situation (and you said yourself, the cancer and chemo probably saved his life).

 My doctor (who has heart disease himself and is a thinking and philosophical guy) says this:

1. Heart disease can kill you very quickly, via a heart attack.

2. Cancer can cause death relative quickly, but more often it takes a while, and now-a-days it's more like a chronic illness that we can hold at bay with various treatments... even when the goal isn't "cure".

3. Other conditions, diabetes, for example, kill you slowly. (My husband has diabetes, which is why he used this as an example. 

So... we all have issues with which to deal, especially as we age. 

And... we ALL die someday, of something.

So... be happy that your father was saved from the 1. "fast death" , and, as you said yourself... the cancer saved him (already)... so be thankful! He can now take his time (relatively speaking) fighting his cancer and he can enjoy the rest of his life, however long or short that is.

I'm not being a smart alec, or flippant.  I'm a cancer survivor, too. I've had chemo, radiation, surgery, and more chemo. (in fact, my treatment was reduced several times during the second chemo due to side effects, but I don't have metastatic cancer, at least not yet).  Right now I'm in remission, and happy to be alive. I enjoy each day (and enjoyed each day even during chemo and radiation, because there was always more to celebrate than to be unhappy about... and, yes, I had side effects, STILL DO from the radiation...), and am thankful for each and every day. 

So, IF your father had not had the cancer diagnosis, he might (like many men) have dismissed the symptoms and right now, not be enjoying his life. (That is, ...as in sudden death from a heart attack...)

Every day brings something about which to rejoice, and something to celebrate. Cancer is hard (I've been there, I speak from experience); but it's also a blessing.  Try to see the glass half full, not half empty. To stress because your father's treatment had to be stopped is a waste of time. Without stopping Avastin to prepare for the surgery, he might have died on the operating table due to bleeding. So this is the time to move on and fight the cancer with treatment NOW, as the heart crisis is over. 

Good luck! I will send positive thoughts your way and your father's way.

...And I hope someone else can give you positive news about stopping treatment for that long, but don't stress about it, there is nothing you can do about it...  (You've already hit the jackpot with his finding out about the heart attack quickly after it occurred!!!)  

Life is GOOD!

Sorry to hear about your sister's problems. I am a three year survivor of rectal cancer. Her bowels may take a year or two to settle down, so she should just get to a point of acceptance about that. She will have a new normal, and it will not be as good as what she had before... but LIFE is better than the alternative, so one just has to accept the negative side effects as the new normal. 

However, she does NOT have to stay home. She can work around the problems and everyone has different solutions. For example,  there are special undergarments that she can wear, OR (my solution) is to wear a pad all the time to line my underwear.  This gives me enough time to locate a restroom when out and about, and if there is a bit of leakage I simply change the pad, and keep clean with portable packages of baby wipes that I carry all the time.  I never leave the house without a change of underwear... not that I need to use it very often, but it's good to be prepared. Another strategy is to identify where the restrooms are when out.  I locate a restroom when I first enter an area, like the mall, a restaurant. A third strategy is NOT to eat right before going out if I'm not going to be near a restroom (like when I go kayaking or boating.) The most problematic activity is eating out (as I often have to use the restroom immediately after eating). So I eat small meals, and only foods that I know do not bother me.  I avoid ground pepper and other very spicy foods. Other than that, I can eat most foods in small quantities.

Just to prove that this eating strategy works, I can tell you that I NEVER stay home, have a full and active life and that includes swimming, kayaking, biking, and walking several miles everyday. And I'm a retired 63 year old woman and love a new challenge so I'm trying new things everyday. I went on a cruise with my husband and two teen-age grandchildren less than four months after my surgery. I was still on chemo at the time (Xeloda, which has as a side effect loose bowels, or diarrhea.)  The only accomodation I had to make was that I could only eat breakfast and dinner.  If I ate lunch, I had problems with having to go to the bathroom and it would have interfered with our activities (snorkeling, kayaking, boating, BOB, snuba diving). So, I had a good breakfast, a few bites of yogurt for lunch (which is good for the intestines) and then had a leisurely dinner at the late serving at night.  Try to have your sister develop her own strategies for living and not having to stay home. I NEVER stay home. Encourage your sister to go out... she'll feel better and it will make her quality of life better... do not give in to cancer and stay home. Stay positive!!

On 1/15/2008 Sallyw48 wrote:

Pain and burning in the rectal area is a common side effect of radiation to the pelvic area.  Unfortunately it will not go away for several weeks after the radiation ends.  Sitz baths can help a little.  Ask your radiologist if there is some sort of cream that can be used.  I tried using a recommended cream that only helped a little bit.  Pain meds might also be useful. This was the most troubling side effect of my 5 weeks of radiation and I was lucky enough to have an ileostomy bag when I had the radiation so I was not passing stool through my rectum.

I did not have any symptoms or pain at the time that I had radiation so I cannot comment on when pain might subside or mobility improve.  I did find that I became more and more fatigued as time went on.  After about a month of treatment, it was all I could do to stay awake for a couple of hours.  All of that passed relatively quickly after treatment ended.

Best of luck!

Sally

Everyone is different.I'm sorry to hear you are having such a hard time.  I had six weeks of radiation (before surgery) and never had a minute of pain from it, except for mild skin irritation on the surface at one of the three sites where the radiation entered my body (to converge on the tumor in the rectal area).  I worked full time during my entire treatment, and except for being tired early in the evening around mid treatment, had no side effects at all except that I lost my appetite and food tasted very unappealing after two weeks of treatment.  Stay positive, and try to be involved in activities that you enjoy to distract yourself from the pain. (I also took Xeloda for the entire time I was having radiation therapy prior to my surgery and for five months AFTER my surgery. No too many side effects from that, either, just a little hand-foot syndrome with some redness (level 1 side effects, not 2 or 3).  Guess I'm just lucky... but then again, I try to always stay positive and walked several miles everyday religiously.  This generates endorphins in the brain and they are natural pain killers.  I STILL walk everyday I can for at least two miles.  It's sometimes hard to force myself out the door, but the emotional benefit from exercise is enormous and I know I need it.  If you can't walk outdoors, you might want to get a little bike pedal like portable piece of  equipment that allows you to sit in a chair and rotate your feet.  Or some small weights that you can use to exercise with your hand/arms. Any kind of exercise will make you feel somewhat better as it gets those endorphins into your system.  (My treatment was almost three years ago, and I eventually retired so I can get adequate exercise EVERYDAY... something that was difficult while working full time, and my job couldn't be done on a part-time basis. I'm 63 years old and a happy survivor.) BTW I hate pain meds as I think they add a burden to the body in addition to the cancer medication... an added burden on the kidneys to filter out all the meds from one's system, so I always consider non medication remedies first (exercise, medication, distraction by doing something else, acupuncture, a glass of wine as a last resort before trying a pain killer...). In fact, I had neurontin and Lyrica prescribed to me, but never took a single pill.  (I now have intermittent POST surgery pain from radiation proctitis.) Frankly, a heating pad works better than any medication and doesn't mess with my mind making me dizzy or sleepy. I'm not willing to take pain meds every day for intermittent pain (once or twice a week, sometimes 3x's a week). I'd rather have the pain because it's only a small part of the time.).  So my suggestion is to try exercise!!