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Old 03-30-2008, 12:34 PM   #1
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Lightbulb Anyone experience adverse effects from pelvic radiation?

Hello. I am a 2.5 yr Stage 3/4 rectal ca survivor. I have ongoing g.i. issues and have not returned to work since 2005. After a recent test called a defacagraphy, I was told the pelvic radiation I received in 2005 damaged my pelvic floor and wall and that is why I continue to have problems either going too much or being constipated or experiencing seepage or fecal incontinence. I was just wondering if anyone else out there in the community has had similar experiences, either just side effects from radiation or specifically, pelvic damage. I can provide more detail of my experience throughout treatment if interested. Just wanted to start out with a question I haven't seen on the boards. Thank you.
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Old 03-30-2008, 01:40 PM   #2
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Re: Anyone experience adverse effects from pelvic radiation?

Hi - I had full spectrum pelvic radiation in 1974 due to uterine cancer at age 22 and a complete hysterectomy. Since then I have had numerous issues which I was never warned about. I began having symptoms of Irritable Bowel Syndrome which for me included excessive gas, diarrhea and general sporatic abdominal pain. I was able to manage these issues and they rarely interferred with my very active lifestyle. I was fortunate not to have any type of incontinence. In 1990 I developed a small bowel obstruction due to a stricture which my surgeon felt was a result of the radiation. This was resolved with surgery although after this surgery I developed episodes where my bowel seemed to stop working for a few hours and I would have pain, bloating, nausea and vomiting until it started up again and everything would resolve itself. My surgeon told me he could see where the radiation damage was on my insides because of discoloration of parts of some organs. In 2003 I developed occassional rectal bleeding after active sports such as trail running. Tests finally revealed I had rectal cancer. My oncologist told me the type of mass I had was a very small, slow-growing type usually seen in survivors of the nuclear attack on Hiroshima! My surgeon made an attempt to spare me a permanent colostomy but after the resection and removal of the cancerous tissue my rectum became ischemic (again due to damage from the radiation) and did not heal. Therefore I now have a permanent colostomy which in itself is not a problem but unfortunately coupled with noisy IBS my stoma acts as a megaphone and every gurgle (and I have many!), "fart" and diarrhea attack are broadcast to those around me. But I do feel fortunate that I am still able to be active - scuba dive, hike, bike, golf, etc. - and am cancer-free. So as you can see radiation therapy can cause many types of problems. I do feel the need to caution people who have been given radiation as a choice for cancer treatment to make sure their doctor explains exactly what the side effects may be now and down the road. My doctor says that there are few people who have had radiation treatment at a young age that are still alive to have the longterm side effects monitored. There are some studies being done now on the long-range effects of cancer treatments given to those especially under 25.

 
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Old 03-30-2008, 06:31 PM   #3
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Re: Anyone experience adverse effects from pelvic radiation?

My husband was treated for Stage 111C rectal cancer nearly five years ago and still has frequent and urgent bowel movements most evenings and sometimes at other times. He is fortunate to be able to work as his office is very close to home but we do not eat out or travel, a price I have no problem paying as I am so grateful that I still have my husband with me. There were times during treatment that we wondered if he would get through it all. He had a rough time. Unfortunately, radiotherapy can have some serious side effects but one has to balance the disadvantages against the advantages. My husband's rectum is quite narrowed from radiotherapy and that probably contributes towards his urgency. He does take metamucil...have you tried that?...but is not sure it helps! However, it does no harm, so he continues. It is probably psychological to a certain extent. I hope your condition improves.

West Coast girl, it is good to hear from you! Hope you are doing well...seems you continue to lead a normal life which is so inspiring to others! It is amazing how we find the strength to carry on our lives. I have lymphoma so we are dealing with two cancers here. The thing is that the further my husband gets from his diagnosis, the less likely it will return. For me, however, as mine is incurable, the further I get from my diagnosis, the closer I am to relapse!! Life is a challenge but I must say presently, we are both feeling great! We take it day by day.

Alison
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Old 04-16-2008, 11:55 PM   #4
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Re: Anyone experience adverse effects from pelvic radiation?

chrissurvivor -- I am a 6+ year rectal cancer survivor and have had ongoing GI issues. For the majority of time, it's been as you described, frequency, urgency, incontinence, sometimes constipation. However, for the last several months, I've been experiencing extreme difficulty in evacuating stool, even when it's loose. I saw my colon surgeon last week and she diagnosed radiation damage to my pelvic area. (She called it "the gift that keeps on giving.") She referred me to a physical therapist who specializes in treating the pelvic floor. I'm seriously considering a colostomy and may in fact have to have one eventually.

Another issue I've been dealing with for about a year and a half is numbness and tingling in my feet and calves (neuropathy). It's interfering with my balance and causing my toes to bend and weakness in my feet and legs. I've had many tests done, blood work, MRIs, CT scans, with no definitive diagnosis - my sense is it's also from radiation affecting the nerves that run through the pelvic area. I'm wondering if anyone else is experiencing this symptom?

chris - what's a defecagraphy? that's a new one on me! Is it a definitive test?

Best of luck to you -- it's sometimes not a pleasant journey, but hey! it's a journey!

 
Old 04-21-2008, 10:55 AM   #5
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Re: Anyone experience adverse effects from pelvic radiation?

Hello. I haven't been checking the boards much lately-sorry.

The neuropathy I have been diagnosed with is an adverse effect of one of my chemotherapy drugs in my second round, after surgery to remove the tumor. The drug is oxaliplatin, name brand is Eloxatin. My oncologist told me of the likelihood of this side effect, so I was not surprised. I also had extreme sensitivity to cold and had to wear gloves to reach into my fridge and freezer during treatment--which has gone away. And I mostly drank room temp. drinks because my mouth and throat were sensitive to cold drinks too. I still have a tendency to drink room temp. today. That was back at the end of 2005 and beginning of 2006. I still have numbness and tingling in the bottoms of my feet. It has lessened, but I believe what is left is permanent. I am not losing my balance because of it though. It is worse in cold weather and better in the summer when I don't wear socks that constrict blood flow. I didn't think there was treatment for it, so I have not sought any.

A defacagraphy is a test where you prep like colonoscopy (clean out bowels), then the doctor inserts barium into your rectum, has you roll around on a table to fully coat your insides and xrays are taken. Then he moves the table to a standing position while you lay on your side and he puts a towel between your thighs. He asks you to push to expel the barium like you are trying to defacate (thus the name of the test) or have a b.m. The doc who performed my test didn't want me to bend my knees, but stay in the standing position. He also took xrays while I was pushing. He later explained to me that in healthy individuals, the pelvic floor would descend downward and there are alot of other things the brain automatically tells the body to relax in order to have a b.m. He said nothing moved on me. My pelvic wall and floor stayed in the same place. He said this was likely caused by my pelvic radiation. He felt bad for having to break this news to me, but I was relieved to have an answer to why I was having such trouble. He said he wasn't sure there was anything that could be done and referred me to a surgeon, whom I have seen recently.

Tomorrow I am going for a test where I drink barium and they wait until it reaches my small intestines and take xrays. Then on Friday, I will be having outpatient surgery. She (the surgeon) is going to dilate my anastamosis (where I am connected back together) and try to dilate my vaginal area too as I am having issues there also. I believe this is done with a balloon technique. I will be put out for the procedure and my husband will drive me home. I will post what happens when I am done to see if it helps anyone out there.

I hope I have been able to shed some light on things for you and others. I am not real good at checking the boards often, due to my tendency to be in and out of the bathroom all day. I usually post when it seems relevant for me. But I plan to keep posting about my progress in the hope that I can help others who may have experienced similar situations like it seems you have. My posts will likely be on this thread.

By the way, I live in Wisconsin and go to Froedtert Hospital and the Medical College of WI for g.i. treatment and surgery. Most other treatment (chemo and radiation) were done in my hometown, Kenosha, which is about an hour from Froedtert, so I could be close to home if I was not feeling well during treatment. My entire pelvic area was radiated. I believe like a year after my treatment, they developed a way to target only the tumor more precisely and I may not have had the damage I now have if my radiation field were more narrow and precise. Hindsight--it can be great if someone else has it before you do! Rather, I choose to use my hindsight to help others.

Take it one day at a time and take care of yourselves!
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Old 04-22-2008, 06:33 AM   #6
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Re: Anyone experience adverse effects from pelvic radiation?

Thanks for the info Chris. I'm surprised my surgeon didn't mention the test, seems like something they'd want to know for sure. She was very quick to diagnose.

I did have a very narrow beam of radiation, not the whole pelvic area. Perhaps your tumor was more invasive?

"Hindsight" is a very good term to use for us! LOL!

Best of luck on Friday, let us know how it goes.

 
Old 04-22-2008, 05:04 PM   #7
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Re: Anyone experience adverse effects from pelvic radiation?

Sorry to butt in on this board (I am recovering from Prostate cancer treatment by Brachytherapy - radioactive seeds planted in the gland 2 and a half months ago). I also had pelvic radiation for testicular cancer 26 years ago (which caused horrendous tenesmus - irresistable need to defecate every 15 minutes - at the time), but which did not seem to have any long lasting effect.

I was warned that the Brachytherapy might cause diarrhoea or constipation 6 months down the line which would be controllable by dietary changes or Imodium, but the last couple of days I have been having considerable trouble which I had put down to unwise eating until I saw your post.

2 days ago I felt as though I wanted to defecate but nothing would come (it felt as though there was a "blockage" somewhere, rather than constipation).
After a day of straining, figs and dulcolax I eventually passed a normal motion this morning, however since then I have been rushing to the toilet every 60 to 90 minutes and passing little but mucus (I have not eaten for 2 days).

Is this anything like you have experienced?

All the best,

T.
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Last edited by tumbleweed; 04-22-2008 at 05:05 PM. Reason: corercting more spelling mistakes

 
Old 04-22-2008, 09:13 PM   #8
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Re: Anyone experience adverse effects from pelvic radiation?

Hey T (that's my nickname too!) - I think I've experienced it all. Diarrhea, constipation, incontinence, urgency, difficult evacuation and on and on. Diet does affect it definitely. If you haven't eaten for a couple days, you might be pretty emptied out and only have some mucus to expel. Mucus usually indicates that there's some swelling in your colon.

I was told that radiation damage can take up to ten years to begin to show up. And I thought I was done with all that, ha.

If you think it might be a blockage, call your doc. It's nothing to mess with, you can get pretty sick pretty quickly, especially if your body is recovering from treatment already.

I'm curious what you consider "unwise eating." For me it's wheat and fat mostly. Sugar. I've done a few food cleanses that have been helpful. But this difficult evac is something different for me and I don't know that diet changes will affect it much.

Feel free to "butt" in any time! LOL!

 
Old 04-22-2008, 10:50 PM   #9
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Re: Anyone experience adverse effects from pelvic radiation?

Hi to the two T's!

First, teelgee: If memory serves, my tumor was categorized as stage III/IV with 0 lymph node involvement. My docs decided to treat very aggresively. Chemo/radiation combo, wait a month, then surgery, then 2nd round of chemo. The radiation burns were pretty rough to handle, but my husband's aunt just went through same thing and they gave her a cream to apply b4 rad trtmts and she didn't experience any burns. I'm glad they have improved things for today's patients--I wouldn't wish that pain on my worst enemy. Chemo round 1--lost about 80 lbs due to nausea, but never vomited. My hair thinned out, but all over, not in spots and it recovered with a vengence to a thick mane. I think there are a few other minor effects, but all that versed I've been given has blessed me, as I've forgotten much of what I went through. Chemo round 2--lost some weight and hair again, but also experience(d) neuropathy in both feet and sometimes in fingers. It was a side effect of Oxaliplatin, and I think I've posted about this before, so I'll stop unless someone asks more about it.

Oh, and sometimes I think we could all become stand-up comedians with some of our one liners and jokes. If you can't laugh at yourself, you'll probably cry (I don't think I got that one right...).

Anyways. My bro-in-law said he always knew I was a shi**y sis-in-law; I say I've lived up to my mom's read on me as a teen "Your not only full of --it up to your eyeballs, it's gone all the way to the top (hair)". I used to think a woman couldn't feel much more vulnerable than when she is giving birth, but I've reached a new 'low'. I tell people "It's the best diet I've ever been on--but I wouldn't recommend it". I'm afraid to admit that I can now join in with my husband and his buddies when they have their "poop talks" - not something I'm proud of, and also not proud that I can best them at times when I say "If you want to compare number of bm's - I got you all - try 48 in 1 day!" That was an all-time high (low for me). Oddly, these guys respect me for being a chick who'd join in on one of their favorite topics of discussion...Oh, and I really do wish I had HINDSIGHT so I can tell where exactly this pain or that is located or what exactly is it that is bleeding (now and then when prepping for tests)...Like I said, if I can't laugh on the outside about some of the rather gross aspects of these diseases, I'd fall apart way too often. Overall, I've kept myself in check and can find private cry time when I really need to get it out.

Now - tumbleweed: I agree with teelgee about what you describe as sounding like the beginning of a bowel obstruction (blockage) happening to you. I've had 4 of them and now I can tell when they are coming on. Don't let it get to the point that you are vomiting before you seek med. attn. go to ER and explain what has been happening. Unfortunately, the first line of treatment is usually an NG-tube (nasogastric) up the nose down to the stomach to help relieve gas and expel bile that builds up. If I catch mine early before the vomiting stage, I have been requesting no NG-tube and instead, to begin with 2mg IV neostigmine, which worked wonderfully during my last 2 episodes. It almost worked immediately and things started to flow and I felt much-much-much better quicker than the 1st two obstructions. I've really gotten to know my body's signs and I listen to them--never ignore them if it seems like something odd is going on. I've also learned to speak up to my doctors if I've heard about a different treatment, etc., or if I want to refuse a specific treatment (like I do with NG-tubes now). I've definitely gained alot of courage throughout the past 3 years--I can take anything on now! Go to ER soon if the seepage continues and you can't eat. I wish you the best. Oh, and I have continued the low residue or low fiber diet I was placed on 3 years ago . I find that my stomach doesn't process nuts, seeds, veins in fruits like watermelon and oranges, skins, beans, and others I can't think of right now, so I've just stayed on low res. diet. I don't feel healthy on it, but it's what my body tolerates. I also think I need to be more regimented with my eating schedule, especially at night--I should eat dinner no later than 5pm and not snack after. It's hard now that I actually have an appetite for some foods that disgusted me for 2 years, but I really think it will help with my all-night wakings to use the bathroom. Again, please get treatment--sounds like a bowel obstruction to me, although I am not certified to diagnose, treat, yada yada.

Today I had my Small Bowel X-ray. Had to drink 4 cups of diluted barium and walk around the halls forever. The test was to see how long it took to go from stomach to lg. colon. I was there 2.5 hours longer than the avg. patient. I told them it was gonna take forever...Friday is procedure to dilate anastamosis, which is kinked into a "j" hook and docs believe that is where my obstructions have been occurring. I think there is more than one area, and I think today's doc agrees (finally! someone agrees!) Actually, I am asserting myself much better and my docs spend as much time with me as I need when I have q's or suggestions. I'll post after dilation procedure when I'm feeling up to it.

Sorry for such a long post--can't sleep...
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Old 04-23-2008, 09:27 AM   #10
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Re: Anyone experience adverse effects from pelvic radiation?

Quote:
Originally Posted by teelgee View Post
I'm curious what you consider "unwise eating." For me it's wheat and fat mostly. Sugar. I've done a few food cleanses that have been helpful. But this difficult evac is something different for me and I don't know that diet changes will affect it much.

Feel free to "butt" in any time! LOL!
Yes, I honestly didn't think of the two meanings of butt, though. I'm not getting any problems above the waist. By unwise eating I meant too much, too much fat, too much spice and too much alcohol. Still a liquid diet for a next few days (or even months probably) won't do me any harm.

All the best

T.
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Old 04-23-2008, 09:45 AM   #11
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Re: Anyone experience adverse effects from pelvic radiation?

Quote:
Originally Posted by chrissurvivor05 View Post
Hi to the two T's!

Now - tumbleweed: Don't let it get to the point that you are vomiting before you seek med. attn. go to ER and explain what has been happening. . . . .Go to ER soon if the seepage continues and you can't eat. ..

Thanks for all your information Chris, I've kept it all on my computer in the "is it going wrong?" file. I am practising my kegel / pelvic floor exercises with more vigour and enthusiasm! and I'm trying a liquid diet for a while and have asked my son to let me know anything he can find out about cause and treatment / amelioration. My problems have not yet progressed above my waist,

All the best.

t'other T.
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Last edited by mod_007; 05-05-2008 at 12:24 PM. Reason: removed claim of specialist knowledge

 
Old 05-02-2008, 05:16 AM   #12
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Re: Anyone experience adverse effects from pelvic radiation?

I received chemo and radiation for 5 1/2 weeks. That's been 1 year ago. I'm experiencing symtoms of vaginal stenosis. It also made me have alot of soreness after my reversal. I don't have periods anymore, this is the one good thing that came out of my treatment. I have hot flashes on and off. I did not have alot of skin soreness while they were doing the radiation. Around week 4 my skin felt very smooth from hair loss, and I had anal itching. I used cream, tried not to scratch and did sitz baths. I wished they would've counseled me more on the side effects before I started. It can cause sexual problems.

Last edited by mod_007; 05-05-2008 at 12:27 PM. Reason: removed slang expression - please use proper terminology

 
Old 05-04-2008, 06:50 PM   #13
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Re: Anyone experience adverse effects from pelvic radiation?

[QUOTE=chrissurvivor05;3539664]
Tomorrow I am going for a test where I drink barium and they wait until it reaches my small intestines and take xrays. Then on Friday, I will be having outpatient surgery. She (the surgeon) is going to dilate my anastamosis (where I am connected back together) and try to dilate my vaginal area too as I am having issues there also. I believe this is done with a balloon technique. I will be put out for the procedure and my husband will drive me home. I will post what happens when I am done to see if it helps anyone out there.[QUOTE]

Well, I had the test and as I suspected, my g.i. system operates very slowly. Normal patient drinks 1-2 cups of diluted barium and test is finished in 2 hours. I had to drink 4 cups of diluted barium, walk around the halls of the radiology dept. a whole bunch (probably got a 1.5 mile workout in) and my test was finished in 5 hours. The doctor encouraged me to go ahead and use the bathroom if I needed to and let him know when I noticed the barium in my stool. THAT never happened, well actually it happened IMMEDIATELY after the doctor pushed around on my too full belly a whole bunch, took some pix and said "OK you're done". As soon as I began to walk out of the exam room, I had to run (thankfully, only across the hallway) to the bathroom, and THERE was barium. Glad I thought to bring several changes of disposable undies w/me - I couldn't control it while walking and there was plenty of it-- to my car and then had an hour to drive home. As soon as I was home I was instructed to begin my 3-day Miralax prep for the procedure on Friday, and even with the prep, was expelling barium for 2 of the 3 prep days. Not too fun, but I'm used to it. I've had to prep for this or that test in the last 3 years at least 20 times if not more. This was my first time w/Miralax though and I did not taste it. I thought I could smell it though, but it may have been my imagination. I diluted it in AZ Green Tea w/Ginseng and Honey and supplemented my fluid intake in between with lemon-lime Gatorade and water.
Now onto the procedure.

Being a former chemo patient, my veins always give nurses trouble when they need to put IV's in me. I always tell them my veins roll and even with the increased fluids, I was dehydrated. They tried 7 times and then decided to just put the IV in when I was sedated. My arms are still sore from the bruising, which spread halfway down my forearm. Getting back to things, my doctor apparently was using a steel dilator instead of a balloon technique to enlarge the opening of my anastomosis and vaginal area. After I awoke, the doctor told my husband and me that she had a CT done and there is another portion of my colon with a pinch in it but she couldn't reach it. She contacted the g.i. doc who does the deed and he was able to fit me in. They released me and removed my IV, which I wish they hadn't. I had to get another IV in the GI lab and have the other procedure done. It was more like a colonoscopy, twilight sleep, and I stayed awake but forgot it after as usual.

Since both procedures, I haven't noticed any change in b.m.'s. but did develop a yeast infection for which I rec'd fluconazole for 3 days. I see my surgeon this coming Friday, and I am going to ask her if I should have noticed any changes yet, if I will be changing bowel habits due to the procedure or if it was primarily done to provide me relief of my recurrent bowel obstructions. Because, frankly, I'm not sure what the goal of everything was and I feel kinda stupid for not checking that out BEFORE having it done. When I have more info. I'll post again.

OH-Response to Cat Az: I experienced vaginal stenosis also, caused by radiation, but it has continued to worsen (I'm at 3 yrs. post cancer). I agree about the sexual problems. Besides anxiety about pain and actual pain when we try, I feel like I am always dirty because of the excessive b.m.'s I have even though I clean myself thoroughly, and the fact that my bum is usually raw/bloody from wiping so much (I have ALOT of b.m.'s daily/nightly) and God forbid, if an accident were to occur (sharing too much?)--but in my mind, who would even want to have sex with me? Although my drive has gone down-another of my personal experiences with menopause and hormone replacement. My husband has been supportive all the way, but if the procedure I recently had done (read above) helps in any way, I'll post and let anyone else who is affected vaginally/sexually what helped/didn't and how.

Signing off for the nite to put my girl to bed. I'm not text mail educated, so I only abbreviate when it's pretty common knowledge. Take it one day at a time!
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