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judyv3
Posts: 59
Joined: Dec 2013

Hi everybody, I posted earlier this month - I'm Newbie.  Actually, Judy is the name.  I appreciate everyone's responses, they really helped balance my emotions.  So I'm going to post again in the hope of receiving wisdom!

Today will be day 18 of radiation, Monday I get my second round of chemo.  I've decided to look at this as the beginning of treatment - the beginning of the end so to speak.  My radiation oncologist said the other day - you're not even halfway through yet, I told him I was going to punch him in the face.  I said I am ALREADY almost halfway through.

The nurse practitioner I saw before the Doc recommended I take Imodium for the diarhhea I was suffering from.  I did and then backed up for three days.  Trouble.  I now have painful hemorrhoids and painful, painful bowel movements.  Lesson learned, no Imodium.  I should have known better.  I have aquaphor with lidocaine which helps, but I can't regulate my bowels.  I'm taking a pro-biotic now.  I just want to go without feeling like my insides are falling out.  So any suggestions are appreciated. Stool softener maybe?  I went this morning, extremely painful (I am blessed by a family member who installed a bidet attachment to my toilet, the water is a little cold, but it makes things so much better).  I did not go yesterday.  

So aside from the above, and vaginal itching (oh the itching), and fatigue - I think I'm doing pretty well.

Thanks to all.

Judy

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

I never found a way to not hurt during bowel movements while under treatment.  I would sometimes take Imodium in the morning AFTER 1st bowel movement and then a stool softener at night so I could potty in the morning.  Ask your doctor about it, of course!  

I didnt have the itching so no ideas on that!

 

PS

NO punching doctor while undergoing treatment!  (LOL). 

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I SO remember the painful BM's and I'm sorry that you are having to experience this.  I really don't have any good suggestions to help ease your pain.  I suffered from diarrhea throughout my treatment from week 2 until the end.  It was miserable and painful, even though my stools were definitely not hard.  You might try the stool softener and see if that gives you any relief at all.  I also had itching of my anal area and never once thought to ask my doctors if it was okay to take Benadryl, but have since learned that others have taken this with some effectiveness.  You might ask your docs if you can try this, but don't take any until they approve.  I'm glad to hear that, despite these issues, you are doing well.  One day at a time!

Marynb
Posts: 1134
Joined: Aug 2012

It is great that you are half way through this treatment! It is tough, but you are doing well. Have you seen the dietician at your cancer hospital? A consult with a dietician may help with the bowel movements. I highly suggest that you drink lots of clean water! Staying hydrated is very helpful. Keep a bottle of water in your hands at all times. Immodium may help again if the diarreah gets bad in the next few weeks. As far as the painful bwoel movements, there may be no way around that for awhile. Distraction may help.
When it comes to dealing with pain, I am a big proponent of distraction, focused breathing, and mind over matter. Much like childibirth, if you have had that experience. Some resort to pain meds, which may just complicate things and do cause constipation.

Hang in there! The finish line is right over the next hill!

eihtak
Posts: 840
Joined: Oct 2011

Congrats on being ALREADY almost half way through treatment! That is a great attitude. Although I dealt with my share of challenges, I had colostomy surgery as part of my treatment so did not have the bowel issues you describe. I was one that took benedryl for itching and it did offer some relief. My tumor, placement, and mild complications and treatment effects put me in tremendous pain and I ended up hospitalized and eventually a couple months in a nursing home. Many do end up spending some time in the hospital but I do hope you can avoid this. For the pain, I just could not get a grip on it so did resort to pain meds. Once on a regular schedule to keep at bay, I finally could get on with things like a little eating and at least an occasional walk. My doctors attitude was that in such pain your body is not always able to do what it needs like "sleep" and "eat" to handle treatment/recovery and actually gets more stressed and increases chances for even more treatment.....kind of a vicious cycle. I was able to ween off the pain meds once recovered. I had a hand held shower head at home and in the nursing home that was wonderful for just soothing the area and keeping clean.

I will keep you in my thoughts and prayers as you face the "beginning of the end" as you say!

TraceyUSA
Posts: 135
Joined: May 2013

More than 1/2 way - WOO HOO!  I never kept track or projected an end date, I just took one day at a time and when the time for the last round of chemo came, I was surprised because I hadn't realized I was almost to the end. 

I had diarhhea the entire time I was in treatment and it was still painful everytime I went (6+ times per day).  One of my docs said to keep a jar of vasaline by the toilet and apply some right before a BM.  That seemed to help some. 

Keep drinking water like Marynb advises. 

Rest and sleep as much as you can, that's when you body heals.

Before you know it this will all be a distant memory.

Thoughts & Prayers,

Tracey

sandysp's picture
sandysp
Posts: 786
Joined: May 2011

Colace was the best stool softener. Ducolax and others just didn't work that well for me. I would take six a day. They really helped. You are going through the worst part of this for the next few weeks. Hang in there. It's hellish but at least when it's over, there is some healing time and it's really over for most of us.

Good luck

Sandy

judyv3
Posts: 59
Joined: Dec 2013

Well, seems the doctor miscalculated when I should receive my second chemo treatment.  She had scheduled it for Day 29 of my radiation but had counted 7 days per week.  Oops.  I can't say that I was disappointed to have it delayed until after Christmas.

I am now taking 4 colace per day and Miralax in the morning and evening.  You'd think I'd be going continuously.  Nope.  It is ever so slightly less painful, but I am working on focused breathing to get through each BM.  One of the radiation oncologists examined me the other day.  That's the first time anyone has looked at the area since before treatment.  Prior to treatment I would cry because of the humiliation of the exam.  Now I am happy someone wanted to check it out and make sure everything is ok.  And it is, phew. 

The radiation oncologist's nurse has suggested Senokot S - she is going to ask the doctor about it.  Has anyone had any success with that?  I feel like if I could gently liquify my BM, I would be in much better shape.  There is no dietician on staff here, I've asked for diet tips and my medical oncologist said now is not the time for healthy diet, I should be eating small meals several times a day and getting protein in as much as possible.  I don't feel really sick, but I don't have a big appetite (which is unusual, I love to eat and I'm a big 200# woman).  I used to eat Fiber 1 cereal every morning and that kept me regular (pre-cancer).  Now I'm afraid to eat it because there are 10 grams of fiber in one serving and that might hurt me.  I just don't know.

And so I continue to face one day at a time.  I feel like I might actually make it through this.  I know that I've been lucky thus far with side effects, so fingers crossed for that to continue.

I wish everyone here the very happiest of holidays.  I know that I am blessed and this is simply a big bump in the road.  I will quietly spend time with my beautiful family and celebrate my grandson's first Christmas with him!

 

Judy 

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

The correct protocol for the chemo (Mitomycin and 5-FU) is to receive round 1 on days 1 - 4 and the second round on days 29 - 32.  That is based on counting 7-day weeks, which would mean chemo would be administered at the beginning of week 1 and again at the beginning of week 5, based on a 6-week treatment plan, which is what most of us received.  Weekend days are factored into this standard protocol, so please double check with your doctor and have her look at the NCCN guidelines.  I'm a little confused on your schedule.

I'm glad your recent exam showed that everything is okay, but I'm sorry to hear about the painful BM's.  I know it can be most difficult.  I would definitely stay away from high-fiber foods for now, such as Fiber One.  I remember eating some raisin bran a few weeks after treatment and, boy, was that a mistake.  I still can't eat the stuff without turning my bowels loose.  It's probably just too much for your insides to handle right now, especially since you are now in treatment.  I think the stool softeners are a better idea.  I really never had to worry about hard stools during treatment as I had terrible diarrhea early on that continued for awhile after treatment ended.  However, I will say that even though things came out in liquid form, it was still quite painful. 

All in all, it sounds like you are doing quite well.  Just keep taking one day at a time and know that once finished with treatment, you can focus on healing.  I wish you all the best!   

judyv3
Posts: 59
Joined: Dec 2013

I am now going to receive my 2nd chemo on the 29th day of radiation.  I don't know how the mixup occurred.  It is a very small hospital though part of a larger cancer institute.  But it is missing the dietary guidance part of the equation.  As someone who was really accustomed to eating a high fiber diet, it is difficult to make this adjustment.  But I guess I better get used to it.

Focusing on healing sounds so good, I just want to get to that point - one day at a time.

Thank you.

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I'm still terribly confused on your schedule--perhaps my brain has just already gone on Christmas break.  Days of treatment are counted from the very first day and each week would be counted as 7 days.  It is not based on days of radiation, which is only delivered 5 times per week with weekends off.  If I'm doing the math right,  if you are not getting your second round of chemo until day 29 of RADIATION, that would mean that you would not receive your second round of chemo until the Thursday of week 6 of treatment, which would be your next to last rad treatment.  I don't mean to be harping on this, but if you are scheduled for 30 radiation treatments, which means 5 days/week for 6 weeks, then the second round of chemo should begin on the day of your 21st. radiation treatment.  I do not know if it makes a huge difference, but I am just going by what the standard protocol is.  Either I'm interpreting your post wrong (and if so, please forgive me) or your doctor has you on a different schedule than most.  I know it may be confusing, but if you forget counting radiation treatments and just count the days since you began treatment, including Saturdays and Sundays, it makes sense.  First round of chemo is days 1-4 and second round is 29-32, as per NCCN guidelines. 

One of the reasons it's so very important to get the treatment right during the last round of chemo is that the chemo will make any remaining cancer cells that have not already been wiped out more susceptible to the radiation.  Standard protocol for radiation during the last phase includes reducing the treatment field and zoning in on the tumor area only--a procedure called "coning down."  During the first phase of treatment, the tumor and entire pelvic region is getting zapped, insuring that any cells that have migrated in that area are also taken out by the radiation.  The last few treatments should be designed to target only the tumor area, which is obviously where most or all of the cancer cells were located.  It is very important to have the chemo right before going into the coning down phase t weaken any remaining cancer cells as much as possible.  During the last few treatments, since the radiation beams are concentrated on the tumor area, a lot of people have their most difficult time during this last week or so.  Please talk to your doctor about all of this and I'm sure she will explain it better than I have.  I hope the remainder of your treatment goes well. 

judyv3
Posts: 59
Joined: Dec 2013

It's still not correct.  I will check it all out tomorrow.  Ugh.

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I would encourage you to get on the National Comprehensive Cancer Network website at www.NCCN.org and check it out for yourself.  You will have to do a quick registration, but that will give you access to this information, along with lots of other good info on follow-up protocol, etc.  Print it out if you can (it's quite a few pages) and have it in hand when you talk to your doctor.  It really does make it very clear as regards the treatment protocol.  I hope this helps and I also hope I have not worried you needlessly.  That is not my intent at all.  I just want you to receive the correct and most effective treatment!  Let us know how it goes.

Marynb
Posts: 1134
Joined: Aug 2012

I hope you have a peaceful holiday with your family. I would question that chemo schedule again.

Also, seeing a dietician during cqncer treatment is pretty standard and it really isn't about "eating a healthy diet". A dietician would go over what you are eating and adjust it according to your symptoms. Wondering what kind of cancer hospital doesn't include dietician? That was part of my treatment team.
I would highly suggest that you avoid processed food like packaged cereals , and stick to whole and unprocessed foods. Avoid all sugars and eat clean, lean protein. Increase intake of clean water. That should help with the bowel movements.
Hang in there! You are doing great!

jcruz
Posts: 225
Joined: Jan 2013

Judy

I think a lot of us lost our appetite during treatment.  I know I did. Pain, fatigue, the way the chemo seemed to make things taste different all had an effect on me.  I relied on smoothies that I made with greek yogurt, fruit and whey protein for most of my food intake.  That and toast.  I also was on pain meds starting before I began treatment because I'd had a surgery and I upped my dosage of the oxycontin several times during my 7 week treatment period.  Because of the constipating effect of the oxy I took both stool softeners and Miralax.  And I cried every time I had a BM for many months, even sometimes now more than a year past the end of treatment.

I'm a little surprised that you've only just recently had an exam.  My rad onc examined me each week and I continued to see her once a week while I was healing.  I recommend that you ask to be examined as you get this close to the end.  You may begin to burn and blister and I just think it's wise to be checked.

One day at a time and this will soon be over.

I hope you have a wonderful holiday with your family.

 

 

AZedj
Posts: 13
Joined: Dec 2013

I received my care at NIH and had a a awesome team that cared for me. The dietician had me on white diet that was designed by NIH for this type of cancer, it slows the gut down. I had diarrhea from week two along with a lot of pain with bowel movements. I am almost 6 months post tx and am still having 5-6 bowel movements and the pain is still 10 out of 10 when having a bowel movement. The oncologist had me take a pain pill each AM during treatment and it helped with slowing the gut down. Its no real badge of courage to not take pain medications during this type of treatment. Hang in there and have a great holiday.

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