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Old 07-15-2008, 10:06 AM   #1
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Re: Anyone experience adverse effects from pelvic radiation?

I just saw my radiologist yesterday and she doesn't think I have vaginal stenosis. I'm going to find a gynecologist and ask their opinion. I have pain and discomfort and can't seem to open up in the vaginal area. Has the dialation helped any for you? Have you tried lomotil? This has stopped the constant BM that always seems to want to pass thru for me. Who told you that you had damage from radiation? I'm wondering if my doctor would admit it if she thought it caused problems for me. My surgeon told me I had narrowing in the rectal area, so I know the radiation did do alot to me. Thank for sharing your info with me and I hope you heal up. How are you holding up emotionally? Some days are bad for me. My desire for sex is very low, compound that with the issues we're dealing with and no wonder we feel this way. Thank God for my husband, he's very understanding. Good luck and God bless

 
Old 07-15-2008, 06:30 PM   #2
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Re: Anyone experience adverse effects from pelvic radiation?

It's been a while since my dilation procedures. There have been changes, however I don't view them as progress. I am back up to 20+ bm's/day and experiencing more fecal incont. - this is what it was like 3 years ago when I was reconnected. I spoke with my surgeon and she suggested lomotil. I've been on it a couple of times in the past and each time it caused me to have severe bowel obstructions, so I cannot take it. Even though I've been told not to take immodium, I do every now and then just to get a break from constant bm's. I only take 1 pill, as I'm afraid of it working too well. It takes about 2 days to work and then I get about a day of relief and my skin can heal a bit from the constant wiping. The next thing my surgeon is suggesting is to have a hose inserted at the beginning of my lg. colon that has a valve attached that goes outside my skin. I would hook up a warm (body temp.) enema bag to it, sit on the toilet and it would flush out my lg. instestines in 1 full swoop. She doesn't perform this procedure, a dr. in g.i. does and he has been on vacation, which he extended another week. So, I'm not sure when I'll be able to discuss it with him further before I say okay to having it done. If I don't like it, I've been told I can have it removed and go the colostomy route. Those seem to be the only other options I have at this point. I'll have to come to terms and get one or the other done just so I can improve my quality of life. At least that's what my g.i. dr. tells me.

As far as sexual functionality. I too, have almost no desire. Mostly because I'm afraid of having a bm during and the thought just grosses me out. I feel so badly for my husband, but he has been very supportive.

That's it for now. Take care everyone!

~Chris
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Old 07-16-2008, 08:23 AM   #3
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Re: Anyone experience adverse effects from pelvic radiation?

What do you use for anal soreness? I have a barrier spray that helps me. Have you had to have a colonoscopy? I made it thru the prep, but I was so scared the day I had to do that. Luckily sitting in the tub and barrier spray got me thru it. Have you heard of a low residue diet? There are a few foods that I avoid plus I eat smaller amounts. I can't afford to lose any weight so I have to be careful. I have the opposite problem of everyone.

 
Old 07-16-2008, 11:04 AM   #4
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Re: Anyone experience adverse effects from pelvic radiation?

Hey there CatAz. I have a cream that is compounded by my pharmacist. It contains Desitin, A&D ointment and prescription lidocaine ointment. I also have a script for lidocaine ointment alone. The lidocaine burns, but then numbs the area temporarily. The cream helps numb and heal (it's basically a diaper rash).

I have had numerous colonoscopies, lost count. I use the above stuff when I prep. Basically though, I have to have at least a day of no bm's to heal a bit--2 days would be better. Hope your test goes well.

I've been on low residue (low fiber) diet since my diagnosis 3 years ago. I try to add in some fiber now and then, but it doesn't break down in my digestive system and things like seeds, nuts, kernels are in my bm's and due to my small anal area, they really hurt coming out. So I mostly avoid them. I miss eating corn on the cob and my home-grown tomatoes when they are ripe. They are just turning red now... I also can't for some reason eat cashews and red licorice. Every time I have eaten them in the last 3 years, I've gotten a bowel obstruction. Weird, huh? I think so. Anyways. I can eat meat, potatoes, well-cooked carrots, sweets, breads, rice and other stuff. I used to have the same weight problem (too low), but of late have begun to gain more rapidly than I'd like to. It is because I have been chocolate obsessed--I couldn't stand to eat it since the cancer until recently and I think I'm making up for lost time!! So, I am exercising my willpower and just not buying it or buying the kinds I don't like but my husband and 5-yr.-old daughter do.

Gotta go. Have a good day.

~Chris
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Old 07-17-2008, 05:34 AM   #5
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Re: Anyone experience adverse effects from pelvic radiation?

Just wondered what do they do when you have a bowel obstruction? I find if I eat meat with cream of mushroom sauce, alot of pizza, a good size steak, I run to the bathroom alot. Do you work outside the home? For now I'm retired. If you knew the problems that you would have from radiation would you have still had it done. I don't think I would have. When I was diagnosed with colon cancer I didn't seek a second opinion, I wish that I would've. Did you have an ostomy? Have you had a proctoscopy done? My surgeon wants to do this twice a year to check my anastamosis. If you have had it done, how uncomfortable was it? I had an ileostomy for 10 months. The bag was a piece of cake compared to now. If I had to do it over I would though. How are your feelings about your scars? I wish I could have plastic surgery to minimize mine. I also had a mediport for months. That saved me from being stuck in the arms alot. I had it removed as soon as they could. Some people leave theirs in. What stage cancer did you have, did you have any positive lymph nodes. Mine was stage 4 with only 1 node. Before I was diagnosed physically I was in good shape, I lifted weights at least 3 times a week. After my surgery I lost 10 pounds in the hospital. That was from my stoma not being stretched open enough. I would try to eat and the food would come back up. I have not gained back all the weight I lost. Physically I feel good where I'm at now. I just want to buff up. My experience sounds very minimal compared to yours. My oncologist has been so helpful compared to my surgeon. Have you tried to get disability? Thank you for answering my questions. God bless.

 
Old 07-18-2008, 06:48 PM   #6
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Re: Anyone experience adverse effects from pelvic radiation?

Hi CatAZ! (And any others who may be interested):

Hope you're in the mood to read, cause this is gonna be a long winded response to CatAZ's q's!

When I have a bowel obstruction, my symptoms are that I don't have any bm's for days, but I do have liquid seepage and sometimes alot of it overnight. Also, I am unable to eat due to the gas pain and bloating and the final symptom is to vomit. In my experiences, the first course of action in the emergency room is usually to place a naso-gastric (NG) tube. This is supposed to assist with removal of bile and/or air that has filled the stomach with nowhere else to go. Then I am hooked up to IV to rehydrate and cannot have any food, only some ice chips now and then. Sometimes this alone has worked for me in the past. If it doesn't work, a variety of enemas are then introduced. One or both of these worked for me the first 2 obstructions I've experienced.

The 3rd time, I went to the hospital prior to reaching the vomiting point, to try to get treatment sooner. I asked if there was some other method to treat other than an NG tube. My gastroenterologist said they wanted to place the tube to get rid of any built up pressure to help me feel better, so I let them do it. However, nothing came out of it after 3 days and I begged them to remove it, as it is very uncomfortable. Besides having to drag around the IV when I had to urinate (from all the IV fluids), I had to unhook the gross tube from it's catch basin. They still administered several types of enemas rectally. Still nothing happened. This was my worst obstruction and in retrospect, I believe it was a slow building obstruction that occurred over a period of about 6 weeks. I had gone to the ER 6 weeks earlier and was sent home with a diagnosis of 'distended abdomen'. I now know in my heart that my obstruction was just beginning, but it was misdiagnosed. I have really learned to be in tune with my body's signals and I can tell when an obstruction is coming on now.

Back to my 3rd experience. After nothing else worked, by g.i. doc prescribed an IV drug called neostigmine. I think he prescribed 2 mg, but don't quote me on that. I don't know if it was that drug or the culmination of all of the other enemas, etc., but I was immediately running to the bathroom and unclogged-hooray! I picture it like those Drano commercials, when the chemicals hit the clog and it whooshes away. That's how I felt. The stomach pain went away, but the lower you-know-where pain began after the first few times in the bathroom. My entire g.i. system was beyond full this time and I was in the bathroom a whole lot. Once things calmed down and the bm's became a bit more solid, I was allowed to have liquid diet, then soft foods. Once I could keep down soft foods, I was released.

The 4th time, I refused called my g.i. doc before I went to the ER and told him I did not want to have the NG tube, just the neostigmine. He contacted the ER staff with those instructions. So they just made me comfortable and admitted me, because I guess patients receiving this drug must be on a cardiac-monitored floor. I think because the main purpose of the drug is for the heart, but a side effect they have discovered is that it helps the g.i. system. Anyhow, I was given the IV neostigmine, but in smaller doses over time and had to suffer until enough of it got into my system to work. That was my last obstruction and I know if I get another one, I'll insist on the higher dosage right off the bat so I don't have to continue suffering.

Next subject - pretty much anything I eat sends me to the bathroom within 20 minutes of finishing the meal. I haven't really pinpointed certain foods that are worse. The numerous x-rays my g.i. doc. has had done show that my g.i. tract is always completely full; other tests have determined my digestion is very slow; and I have noticed that it takes a long time before I can 'see' certain foods in my bm's--like 5-7 days after I've eaten something, I'll see some evidence of it and think back 'hey, I ate that last Thursday!'. It still surprises me.

I have not worked since my diagnosis on March 31, 2005. I am still on long-term disability from my company. They terminated my employment in (I think) April, 2006, but I am still covered under the company's disability carrier. I am on COBRA healthcare, but that will be expiring next month. My company's policy required me to apply for Social Security Disability to continue receiving benefits. I was denied twice and until recently was awaiting a hearing before an Administrative Law Judge with SSA. I just found out Friday that I received a favorable decision! I won! Now the disability carrier will reduce the amount they pay me by the amount I receive from Social Security. I will still receive the same amount, it will now come from 2 sources instead of one. The judge made the determination that I am disabled for my former job and any other job due to my urgent need to get to a bathroom often and the fact that I have 15 to 25+ bm's per day, which when he figured out an average time that I'd be spending in the bathroom per day, I would lose nearly a whole day of productivity out of each week, and that's how he determined my eligibility. He didn't even think about the number of days I might be out sick due to my issues, but I'm sure I'd miss at least 1 more day per week. I am glad I finally got the decision I was waiting for. Although, I think contacting my Congressman had something to do with expediting the decision. I was told my by atty. that there is a 6-18 month backlog in getting hearing dates assigned and I was approaching the 14 month mark. Someone, and I really wish I could remember who (so I can thank them) told me to email my Congressman and see if they could do anything to help speed up the process. I think it worked, and only wish I had done it sooner, but very thankful and relieved that it is complete now.

I am pretty sure I would have had the radiation even if someone had warned me about the problems. I would of course, have discussed the pros/cons with my husband, but pretty sure he would agree. We had a 2-year-old daughter to raise so there was no way I was not going to use every weapon in my arsenal to fight my cancer. It took us 10 years to finally get pregnant and have her (we were about to consult a fertility specialist and I missed my period!). I was only 38, alot of living left to do.

I did seek a second opinion on the surgery, because the first surgeon I saw was a general surgeon and was going to cut out the rectum and attach a colostomy with no other options. I had done my homework, having worked in the pharmaceutical industry for 17 years and knowing many doctors and nurses, I had some wonderful guidance. I asked my second and ultimate surgeon, who was an oncological surgeon with experience performing a sphincter-sparing procedure, which I had read about, if he agreed with my oncologist's plan for concommitant radiation/chemo, followed by surgery, then a 2nd round of chemo. He said it sounded like the norm for an agressive treatment plan. I was staged at 3 with some 4, no nodes. My surgeon stated that my tumor was ping-pong ball sized and that based upon studies of tumor growth rates, mine was cancerous for 5 years and was a polyp for 10 years prior to that! The best news he gave me was that I had a 100% chance for cure, with 80% chance of NO recurrence with the whole treatment plan. I had a temporary ileostomy too, for 9 months. It grossed me out from the beginning, but I began to get into a routine of caring for it. I had alot of trouble with it. My bag would burst in the middle of the night from filling up w/gas, my paste and rings wouldn't stick well enough and I had several embarassing leaks. My skin was so sensitive to the adhesives that it was raw and bleeding for most of the 9 months. And, my very first obstruction was just before it was to be surgically taken down and I was going to be reconnected.

Not sure if I've had a proctoscopy. My cancer was in the rectum, all the way down, where the sphincter muscle is, so I'm pretty sure they can just take a look to see how my anastomosis is doing (I know, gross--but isn't most of this? Never thought I'd be talking about my own poop so much in my life! I thought being pregnant and examined down there for that was enough of a dignity testing process-butt (get the pun?) this is ridiculous!).

I am very unwilling to go back to a bag, which my g.i. doc keeps telling me will improve my quality of life. I just remember the problems I had and even though that was a temporary bag and was only meant to last a finite period of time, I just hated dealing with it. Not to mention the turn-off sexually it is to see. Not that sex has been a part of my life with things the way they are now either...

Oh, I had a couple of ports. My 1st one, which was placed by that 1st surgeon I didn't end up staying with, got infected 1 week before my 1st round of chemo was to end and had to be removed. They put in a PICC line for that remaining week and they are temporary. Then I had another port placed after surgery to remove the tumor/rectum--when I was having my 2nd round of chemo. I had it removed when they took out my illeostomy. I also asked if they could remove my gallbladder, since they found stones during one of my many tests and I had been having pain. So I was planning to have 3 procedures done at one time--but they found an umbillical hernia when they opened me up and had to repair that too--so I had 4 things done in one operation!

When I gave birth, my OB tried to induce me for 3 days. She finally had to perform a C-section (In hindsight, once again (another pun too!) I believe my cancer was the cause of my fertility problems and my inability to respond to the induction drugs). It scares me to know that I had cancer while carrying my daughter. So my c-section scar is horizontal and pretty much unnoticeable now, just above the hairline. But my other scars make me feel disfigured. I don't mind the one from the ports (they were both placed in the same area, to minimize the number of scars). The stoma scar is minimal, but is still discolored like a bruise-that I can deal with too. My issue is with the long, jagged, stapled scar that extends from just below the center of my ribcage down to my c-section scar. It goes around my belly button. I liken the appearance on my stomach to 3 butts in front and 1 (the only 1 I should have) in back. One side of my stomach at the bottom is larger than the other (the opposite side from where my stoma was), so I'm uneven on the left and right sides and the scar is still painful, in addition to not being straight. It is definitely better than it used to be, but I would have plastic surgery in a heartbeat if it was something we could afford, like a luxury. I just can't justify spending the money on it in my own mind. I'd feel as though it was an unnecessary expense.

Oh, maybe I forgot to mention, my husband quit his job when Michelle (our daughter) was born to become a Stay-At-Home Dad. It was always our "5-year plan". My career was going really well. We paid off our 1st mortgage early, moved to the neighborhood we wanted our daughter to go to school in (more $, better schools). Things were really good--then I decided to have my bunions fixed to prepare for our someday family vacations which would require alot of walking. Just after that is when I got my cancer diagnosis (went to the OB for my annual exam, thought I had hemmoroids still from my pregnancy-she said nope--it's cancer unless is proven otherwise-go get a colonoscopy). But I regress. I am glad my husband was/is not working though. We both needed him so much in these past 3 years. I still have days I wouldn't be able to handle taking care of Michelle now and then and it helps to not have to worry about it. All 3 of us have benefited so much from being together all this time. Of course, it is sometimes hard to be around your spouse 24/7 for 3 years and we get on each others nerves, but we have endured. Michelle is starting school this fall and my husband is looking for work, which was also in the plan.

I lost 80 lbs during treatment. I tell people that it was the best diet I've ever been on, but I wouldn't recommend it to ANYONE...My low point was 115 lbs, and that made me look emaciated. I was stabilizing at 135-145 until recently. I wouldn't term myself 'physically fit' at least since I hit my 30s. But I wasn't ever sick more than the usual cold now and then prior to the cancer diagnosis.

There is no history of cancer in my family-I am the first. I have 2 older brothers, 2 older sisters and 2 younger sisters who are fraternal twins. I could have had genetic testing done, but insurance wouldn't pay for it. I told my bros/sis to get colonoscopies. Some did, some didn't. My dad also. His was negative as were the siblings who got tested. The others are either scared or just prefer not to know.

Sounds like we have had many similar experiences and are in close to the same stage of survivorship (if that's a word?). Did you ever go to a support group? I didn't. I did have a few people in the infusion room that had same cancer when I was having 2nd round of chemo and we talked. I used to email one of the ladies, but we have since lost touch. Others, I have been sending Christmas cards to since we met, but haven't heard from them since treatment ended. Everyone moves on in their own way, I guess. I ask about them when I see the nurses at my oncology office and they are doing well, which makes me happy.

Where in AZ do you live? We were just in Tucson in June to visit my bro-in-law, his wife and their grown daughter. They have the oldest daughter in my husband's side of the family and we have the youngest. I also have a sister in the Phoenix area.

How old are you if you don't mind my asking? Not that our topics have been the least bit taboo to begin with!!!

My fingers hurt now, so I'm going to stop typing for a while. If you come up with other q's, just ask and I'll do my best to answer. Especially if you want to know more about disability, I'll let you know more of my experience and maybe it will help you out in some way.

Take care and "talk" to you later,

~Chris
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Old 07-20-2008, 06:13 AM   #7
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Re: Anyone experience adverse effects from pelvic radiation?

Hi Chris. Your answers to my questions are very helpful to me. Thank you so much. I just turned 50. I am only 4ft 11 inches tall. I only weigh 85 pounds. After my resection I had lost 10 pounds, due to the stoma not being open enough I wasn't able to keep anything for about 5 days. When I was discharged I looked anorexic. But I look thin but healthy now. I've always been very small. What chemo drug did you take? I was on Folfox first along with radiation. The second course I was on oxiplatin. I still have a little numbness in my fingertips and toes. I am so glad to be able to drink cold drinks again. Like I said I was lucky as my side effects were mild. My hair thinned out some, but at least I still had hair. I didn't have alot of problems when I had my bag. My skin would get a little tender but never raw. My bag stayed on really well. In summer I had to change it every 3 or 4 days, especially if my skin perspired alot. I used to scratch where the appliance fit around the stoma. I remember when my husband saw the bag and stoma on me for the first time. He didn't bat an eye and said. We'll do whatever it takes to make me better. He's been so supportive of me. I can't imagine what people do when they don't have that. No I haven't been to any groups, but I bet it would be helpful. This board has been a real help to me. Like you I to have a C-section scar, it's a low bikini scar. Then I have my surgical scar, it goes from my belly button to past my c-section scar. Then I have my reversal scar, which is about 2-3 inches long. These scars have faded alot. I also have a little pocket of fat on my left side, so it looks uneven from one side to the other. I've been seeing a therapist for depression. She's really helped me. I took zoloft for only a few days but didn't like how it made me feel. It also seemed like it was harder to control my potty issues. I haven't worked since Jan 2007. I'm not planning on returning to work for quite a while. What employer would put up with all the time we needed to be in the bathroom. How do you deal with the pain you have from the soreness? Before lomotil I used to get in the tub and sob because it hurt so much. That's when I started having suicidal thoughts, I just wanted the pain to end. I still take darvocet for pain once in awhile. I also have an anxiety medicine which knocks me out. I live about 5 miles from Pekin Illinois. I'm hoping to travel in October. Last year we took 2trips. One after I finished chemo and radiation and the other about 3 weeks before I was done with chemo. I cherished both of those trips, we went to Branson. The music shows made me feel so good. For about 2 hours each day I would forget all that I was going thru. I also cherish the times I have now with my husband and family. I'm an only child and have lost both of my parents. All of our boys are in their 20's. Sorry this is such along one. Well I must get a few things done. Hope you have a quiet day and aren't in the bathroom alot? I ate jambalaya yesterday so hard telling what that will do. We had a big birthday bash. I couldn't stay out of that food, it sure was good. Thank you Cat AZ

 
Old 07-22-2008, 05:07 AM   #8
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Re: Anyone experience adverse effects from pelvic radiation?

Hi Chris! I saw my gynecologist and he wants me to use vaginal estrogen tablets. Also use a dialator 4 or more times a week. He did feel that I have shortened up in the vaginal area from the radiation. He was very gentle and very encouraging. Sorry out there if anyone feels like this is to much information. I'm very lucky as to the numbness and tingling I had from the oxiplatin is almost gone now. I push mow my front and back yard for strength in my legs. I did this even when I was on treatment. I'm staying in shape from this as to it takes me about 2-3 hours to mow. Chris how often do you have a mammogram? How about a pap test? My Dr didn't seem to think that he could even do one at this time. Maybe in 3 months he might. Thanks Cat AZ

 
Old 07-23-2008, 06:17 PM   #9
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Re: Anyone experience adverse effects from pelvic radiation?

Hi Cat Az (I only recently realized you live in IL not AZ, duh!)

I have been using Vagifem tablets and dilators (started with a small and 'graduated' to a medium) off and on for about 2 years now. When using the dilator, my OB/GYN told me to use lidocaine gel and Replens vaginal moisturizer. I insert the tablet nightly before bed. I can use the dilator anytime I have a few private minutes. My instructions are to coat the dilator with both gels, insert and keep in for 5 minutes 3-5 times/week. My dilators came from my radiation oncologist's office and are white plastic cylinder shape with one end rounded. Intitially when I went to my OBGYN to discuss the small dilator being too small after using a while, she showed me some "other options" that were flesh colored and kind of natural looking, if you know what I mean. But, she didn't have anything larger than the small white cylinder I already had. So I went back to my radiation nurse and she was able to provide a larger white one. I don't think I've "graduated" again, just have stayed the same for a while now. But, I also do not use it 3-5/week like I did initially. Mostly because of the intimacy problems we have discussed previously.

I am 41. Had my 1st mammogram at age 40 and just last week had my 2nd one. Both with negative (good) results. I have gone annually, without fail, for Pap since I was 17. Always normal results, except for in 2005 when my OB/GYN referred me to get a colonoscopy done and the cancer was found (Pap test was normal though). Since radiation, my OB uses a pediatric speculum and is able to scrape enough cells without making me uncomfortable.

I doubt this topic is any more gross than most of our other issues...so don't worry 'bout it.

( removed )

Hope everything else is going well for you after my last really long email.

Well, take care and have a good evening.
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Old 07-23-2008, 06:42 PM   #10
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Re: Anyone experience adverse effects from pelvic radiation?

Hey again Cat Az, I just realized that yes my long explanation was posted and I just now saw your response.

I feel a sort of kinship with you that I haven't felt since having chemo in the doc's infusion room with my colon cancer buds back in 2007. I am 5 ft. 4 in. and currently 150 lbs. I feel better when I am in the 135-140 range, but I don't feel too badly at 150.

I wonder if it is because of the stoma scar that we both have that lopsided left to right belly thing--probably.

I have been depressed and anxious since diagnosis. Tried various antidepressants and they made me feel numb so I didn't even feel happy, so I would go off them. Right now I take nortriptylene 25 mg. My g.i. doc prescribed it mainly to help me sleep. It doesn't seem to help w/depression though and when I was speaking to my oncologist's RN, she said I should ask my g.i. doc to slowly increase to a more effective dose. I haven't seen him yet, so haven't asked yet. I also take lorazepam for anxiety if I haven't mentioned that before. Other meds include: Prempro for radiation-induced menopause; Prevacid 30 mg for GERD; Multivitamin with Lycopene, 1500 mg Calcium + D for osteopenia (a precursor to osteoporosis--again likely due to radiation weakening my bones and sending me into menopause which also weakens bones due to faster loss of calcium); and Potassium Gluconate. I used to have to take Senokot-S, but since my dilation procedures, haven't needed it to keep things moving-they won't stop!

I've got to get my daughter headed to bed, but I will look up what I started my 1st round of chemo with. Folfox sounds familiar, but I'm not sure it is because I was given it or if because I worked in pharmaceutical industry. I know I was on a couple of chemo drugs in 1st round and I wore a pump 24/7 for 7 days a week. I'll look into my old files (I keep everything) and write again either later tonite or tomorrow.

Again, have a good evening and I'll write again.
C-ya
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Old 07-25-2008, 05:06 AM   #11
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Re: Anyone experience adverse effects from pelvic radiation?

Hi Chris! I do believe that our scars are that way because of the reversal scar. Yesterday I found myself angry when I think about the issues I will have to deal with from now on. Somedays I find that the issues that you and alot of us will have to deal with for the rest of our days our just unacceptable. All the side effects that we deal with from treatment also I find unacceptable. What do you think about this? I lost my temper big time the other day. I haven't done that since I was diagnosed. I know now that I'm feeling more like my normal self. I'm starting to be able to say what's on my mind instead of just stewing about things that are bothering me. Have you experienced any of this? Tuesday I go for my Cat scan. Then I'll be done for the rest of this year. Are the vaginal tabs helping? Sounds like we have the same dialators also. Did they stress the importance of using these to you while you were going thru treatment? If you didn't use these you might not be able to be intimate? They didn't stress this enough to me. Also what was your opinion of the pump you had to wear? I hated that little booger. It was always getting in my way, when I would scrub my floors, paint or do yard work. I couldn't wait for them to take it off. Have a good day Chris! Cat AZ

 
Old 07-25-2008, 05:34 AM   #12
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Cat Az HB User
Re: Anyone experience adverse effects from pelvic radiation?

How did you make it home after you had your exray and drank the barium? Were you able to stop in time? Is this the same stuff they have you drink for a scan?

 
Old 07-26-2008, 12:04 PM   #13
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chrissurvivor05 HB User
Re: Anyone experience adverse effects from pelvic radiation?

Cat Az and others:

Hey there. So far I am having a good day - hope you all are too! If you're in an angry mood, try to channel it somewhere that gives you positive results if you are able--like walking fast, looking at photo albums of your children/family, even playing whack-a-mole! Vent your frustration towards better health and you cannot help but benefit somehow. You may still be angry, but you might be in better shape. Who knows? I don't always practice what I preach of course, but if my thoughts inspire someone, I'm happy to post them.

I have good days and bad re: mood swings/anger. Even though I was thrown into a very bad situation to deal with suddenly when I was diagnosed, it has not all been bad for me. After the initial shock and the surrealism wore off (this really isn't happening to ME, is it? I'm too young...etc., etc.) My husband and I made the decision to find the best care we could and fight the cancer, no matter what happened. As I've said before I was given pretty great odds: 100% cure/80% chance of no recurrence.

I was told what to expect in most cases by my doctors ahead of time, so most things didn't surprise me when they occurred. That doesn't mean I didn't suffer physically and mentally.

I was very weak and unable to do much during treatment, my hair thinned out a lot and clogged the shower drain frequently (which for either a woman or a man is terrifying when it first happens), I couldn't get past the smell of many foods, let alone eat, thus losing 80 lbs in a relatively short time period. I was nauseous all the time (but I never vomited because of chemo). I didn't love having to wear the pump 24/7, but I was medicated for sleep, so it didn't disturb me unless an alarm went off and that only happened twice if I remember correctly. It was just something else I had to deal with and so I did. I suffered SEVERE radiation burns in my very sensitive private areas. So yes, during treatment I had a lot of anger. I still have some times when I feel I've suffered enough and wish the post-treatment effects would just fade away so I could feel normal again. There were many rock-bottom lows and feelings of desperation along the way, but I got past them somehow. I try (and it takes effort) to remain positive as much as possible. I still to this day feel grateful that I was not as bad off as many others I would see in the infusion room. I do not know if I would have survived or fought this hard if I had some of the problems they had. I get accolades all the time from my friends and husbands family that I was so brave. I don't feel like I was, I was just getting done what I had to get done.

My biggest help has been the fact that my husband and I have a 5-yr.-old little girl to teach how to grow and become a self-confident, adventurous, brave child and woman, and she really picks up on the examples we set, so we've got to stay aware of that. She is so wonderful and really wants to be a good person and even at her young age thinks about the feelings of others, not just herself. She has a great conscience and most of the time, she doesn't just act, she thinks about what the consequences will be before she proceeds (MOST of the time-she is a kid afterall, so there are times...). She just amazes us and we feel great that we are doing our best work of our lives in raising her. We are not perfect, but we have similar views and expectations about how to tackle raising a person that didn't come with an instruction manual!

That is what keeps me going. All the things I used to feel were so unjust and unfair--I am willing to deal with all of it, because I have her to inspire me to be a better person, to get me moving when I just don't feel like it and give me as many hugs and kisses as I want whenever I want them. She even will sit and cry with me when I need a good cry. That's why I keep going and exploring uncharted waters in my efforts to become a whole, normal person again. So I can continue working the hardest and most rewarding job I've ever had--being a parent. I plan on seeing her through her ups and downs in life and helping her all the way. And then helping her children. I plan to be on this planet for all of that, so I can't stop finding new ways to get better.

To answer some of the other questions you had Cat Az, I was not told about what a dilator was or to use one DURING radiation treatment. When I spoke w/my radiation oncologist and her nurse about my vaginal effects (later diagnosed as stenosis) I was given the dilator at around 9 months AFTER treatment ended. I was not warned about ANY effects that would occur long AFTER treatment ended, only those that would affect me during treatments. I also wish I had investigated it further, but too late for that now and I must move forward for myself. I can, however use boards such as this one to WARN OTHERS who may be faced with the same issues. If nothing else, they will have MORE QUESTIONS to ask their doctor. I urge everyone I know now to write down EVERYTHING they can think of and bring the list to their appointments with a pen to write down responses from the healthcare providers. AND to ask if there are any details that HAVE NOT yet been brought to their attention that they should know about. I now ask about long-term effects after procedures/treatments/medications are recommend. As many of us have learned at such a late stage in the game, these things MUST be brought up and the answers should be explained as well and as long as necessary until they are understood. I also bring someone else with me to most of my appointments (usually my husband), so if I forget something, he can back me up.

The Vagifem seems to work well for me as far as taking care of the dryness. The dilator works for a while, but if I discontinue use, my tissue shrinks back down again. Plus, we still are experiencing intimacy issues due to the g.i. problems. So we are not focusing on this area at this time. The g.i. issues are priority #1 and the intimacy issues will improve once we reach our first goal.

I've got to get outside for this beautiful day we are having, so I'll check back later. I hope I've helped in some way...

Hang in there - I hear 50 is the new 20! Have a good day!
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~Chris (rectal ca survivor since 2005 & still taking it day-by-day)

 
Old 07-26-2008, 12:15 PM   #14
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chrissurvivor05 HB User
Re: Anyone experience adverse effects from pelvic radiation?

After the Defacagraphy procedure where I drank a WHOLE LOT of diluted barium, it was a bit of a challenge. As I walked through the halls of the hospital, I passed 3 bathrooms and stopped in all of them to change, then I put on 3 disposable underwears and placed a leak pad on my car seat in order to get home (didn't stop all the way). Just got in the shower when I got home and felt a bit better after that. Wore disposables for 3 days and just dealt with it.

I didn't have to drink as much barium for pet/cat scans, so that was expelled slowly over time. I was told to keep drinking fluids after the test and the next day to push the barium through my system, which took about 4 days with my slow g.i. system, but may work out better for you. Try not to worry too much. I'm keeping good thoughts for you--hope you can feel them. Take care!
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~Chris (rectal ca survivor since 2005 & still taking it day-by-day)

 
Old 07-28-2008, 05:03 AM   #15
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Location: Pekin,Illinois
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Cat Az HB User
Re: Anyone experience adverse effects from pelvic radiation?

Hi Chris! What symptoms did you have before you were diagnosed? What test did you have before your surgery? Did you know before you had surgery that you would have an ileostomy? Did you know you were going to need chemo and radiation? What was it like when they put your mediport in and then removed it? How long in the hospital did you stay? I didn't know when I went in for my resection that I would wake up and have a bag on or that one lymph node was positive. I found out also that I was going to have to have chemo and radiation. I was in the hospital 10 days. 3 days after coming home I went a close friend's funeral. He died of lymphoma. I walked very slow and was pretty weak. 10 days after coming home from the hospital we went to a dinner theater. I still moved slow, was still weak but I had a good time.. We were celebrating our anniversary. When they put my mediport in, about 3 hours later it was really sore. The Dr removed it with only a local in his office. I was surprised how uncomfortable it was a couple hours after being removed. Did you ever get a rush when they took blood from your port? That used to be the high lite of my day when I'd get my rush. watermelon used to taste so good to me when I was on chemo, also lemonade did to. I never had a bad taste in my mouth after chemo and food always tasted good. I used to always have gum in my mouth it helped with the queasies a little. I had vaginal and rectal sonograms before surgery. Did you have those? They numbed me for the rectal one so it wasn't bad at all. All during treatment I was able to push mow, garden, paint rooms at my parents house, keep my house clean, plus clean out 2 other houses we had. I would crash early at night. Once in awhile I would lie on the couch all day and sleep but usually I kept busy. Sorry about all the questions. It's good to being able to compare notes with a fellow sufferer. Cat AZ

 
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