I need some feedback. Here I am 5 months after radiation and thinking that should have experienced all of the aftermath of radiation. I had 30 IMRT along with chemo in Dec/Jan 04. Everyone has been amazed at how much salaiva I have managed to retain, from the dentist to the radiation oncologist. I suddenly woke up last week snoring the dry mouth kind. (it was mine) My mouth is like the Sahara. Has anyone else had this experience so far out from Tx? I should be grateful for the months with spit, because I am really missing it now. My flap feels like a cotton ball.

Here's the other help I need. I recently really had increase my pain meds to cope with some intense chest wall pain. I can't get the constipation under control. I take Lactulose everynight along with some Milk of Magnesia, but that's not helping. Any suggestions would be most appreciative. A bit embarrassing to have to ask for bathroom help, but I'm desperate.

Thanks!
Lynn

Don't be embarassed to ask for bathroom help -- that's a huge part of the treatment, and we've all had issues there... I still count two "stopped up" experiences as the absolute worst part of all of this -- think grown man whimpering on the bathroom floor...

I don't know how your swallowing is but I took stool softeners (two pills in the morning and two at night) when I was taking a lot of pain meds. Folks have recommended to me taking Senekot S. At one point, my nurses gave me something they called "a detergent." I never had to use it but they promised it was powerful stuff. Might want to ask around and force the issue more with your health care folks...

As for saliva, mine seemed to get worse about two months after my last treatment. Of course, I had weened myself off of Saligen pills as well weeks earlier. It's a tad better now but still "Sahara like" at night. I swish with Biotene rinse before I go to bed, and often put some type of oral gel on my tongue and gums after that. It seems to help some... Sometimes I have to keep swishing Biotene throughout the night...

Best of luck to you!!

lynn,

a natural and traditional remedy for constipation that so far seems to work for my sister (who's also having constipation since she's increased her pain meds):

eat a pear (by mouth or pureed if you have a peg tube) first thing in the morning, and follow that with some lukewarm water.

be well.

gita

Lynn, I found that the best solution to bathroom problems was good, old fashioned prune juice. Of course, I started using it with my peg, but a small glass of prune juice in the morning helped me a lot. I also had the plugged-up, bathroom floor experience and wouldn't wish that on anyone.

Lynn, if the humnidity's down it can cause the sudden nighttime dry mouth. Case in point, recently took a trip to Australia. Inland New South Wales I had dry mouth like pry my tongue from the roof of my mouth. Norhtern in Queensland coast in Cairns no problem. Notice the difference here too when the humidity is low, which is rare.

Don't worry about the bathroom help, we've all been there. Calling Roto-Rooter one day, looking for a cork the next. Let the doc know about the problem, should be giving you stool softners anyway.

Bob

Hi Lynn,

Ahhh the bathroom adventure! I, too, remember a couple of occasions where I was in so much pain that childbirth seemed like a walk in the park! What's worked for me, and I use this daily, is a glass of prune juice in the evening and also taking 3 doses of Benefiber each day. I've also used suppositories and MOM but the prune juice/Benefiber cocktail seems to work the best for me. Using milk of magnesuem sometimes would cause stomach cramps for me. Good luck!

Hugs, Nancy

Lynn,

I've had dry mouth problems fairly steadily since radiation, since I didn't have IMRT (I've also been on Salagen for almost 14 years). Some days are worse than others, but I have found that if I sleep for very long on my back, my mouth dries up very quickly (I can identify with the Sahara feeling -- I tell my husband I feel as though I've been chewing on sawdust all night). Also, I have to keep my head somewhat propped up during the night.

Lately I've been doing the Biotene ritual before going to bed, and that seems to help a bit.

Cathy

Just a quick note to anyone that has to use the stool softeners.

Wal-Mart Equate brand is about a quarter of the nationl brand pricing. Especially the Senokot S.

Equate comes in two forms. Stool Softener alone and a Stool Softener with Stimulant Laxative. (Exact same ingredient listing as Senokot S)

This stuff adds up when you take it daily.

Take care,
Dinah

I wish I could have consumed any kind of fruit or even juice but the acidity from it put my pain threshold over the top even with pink magic, morphine and all the other stuff.
I used Senekot S, Preparation H and tried various other remedies. Nothing really improved substantially until I was able to wean off of the pain meds. The constipation issues were the worst effects managed by my team - they got a "D-" for that. The nausea was nothing compared to the constipation. Since the nausea had a higher visibility my caregiving wife was way more concerned about that (she was sick to her stomach last night so I got a taste of the helplessness of watching somebody sick to their stomach). As disconcerting as it is I don't think many people die from vomiting (unless you're a rock star that is- and because they have aspirated it while unconcious).

Lynn,

I used Senakot or Senakot S and took two in the morning and two in the evening before bed. You still have to drink a lot of water. MOM reqires a lot of water too to be effective. When it got too bad, though, I opted for the fleet enemas if it was too painful. I only made it through one grown man whimpering on the floor episode and called out the big guns after that.

If you have a juicer, cabbage and pear juice do a great job, too.

Ed

Since my last radiation on April 28, 2003, I have had no salvia or taste. I can't take Saligen because of my asthma. It's been very hard. I can't get any weight on. My diet isn't anything but soups, poached eggs, mashed potatoes, and milk shakes. Also two or three Ensure a day. I have to force myself to eat. I go through 12 to 14 glasses of water a day. I take stool softners every morning and evening. That seems to help.
Mary Lee
SCCStagelV,gum and jaw bone, surgery 10/1/02,lower neck lymph node,surgery11/14/02,jaw bone,surgery,12/31/02,upper lymph node surgery 2/7/03,upper lymph node surgery 3/7/03-a node was hiding,also neck musle and artery done, radiaton 4/28/03,six weeks

Lynn-

This is WAY late from your original post but "just in case" here's a miracle - Miralax! It's a powder that mixes in anything to - this is no joke - with no significant texture change or added flavour. It takes about two days to kick in but taken regularly - it's the bomb! Sorry for the pun. Though my gasto-guy is treating me for IBS, he said he's seen several people with all types of cancers suffering (mostly due to pain meds) that have integrated it - even those with difficulty swallowing! It's so transparent/thin it can't possibly contribute to plugging up a G-tube.

Hugs to you and yours. I enjoyed getting together with you and your family very much.

Much love and prayers-

Susan

Bathroom suggestions: Flax Seed Oil pills (probably availale in liquid, too) and/or adding a tablespoon of Canola Oil to a drink.

Sabrina

Lynn, I had the floor of my mouth removed about two years ago and, of course, what salivary glands the docs didn't take, the rad killed. I had radiation every day for six months. I've been on Saligen for over a year and I can really tell the difference when I run out of the pills. I'd like to ask: has anyone tried SALIVART? I'd like some feedback if any of you have tried it.

Thanks,
Sandy

Sandy,

My husband used Salivart and it was helpful to him for short-term relief of dry mouth (Salagen didn't do much for him, either). He kept it by the bed to use during the night or first thing in the morning. It is like a mild, salty-tasting mist that you squirt in your mouth and you can use it as often as needed. It's available online, just keyword in google and you'll find it. I think we paid $11 for a convenience-sized can and it lasts a good while.

Christine