I heard about an NIH Clinical Trial to increase saliva flow for people who have been a survivor for 5yrs+ and have some saliva after RT. It starts in August, requires daily visits for slightly painful injections for at least a 2 week period. Is this something I should consider? It is far enough away that I would need to stay there. And, it's for 18 days, then several checks over the next year. A Big commitment! No question, my saliva flow has been greatly reduced from RT, but over the 11 yrs it has gotten better. Some mornings I wake up and surprise myself that I didn't take a sip from my Camelbak (a non-spill water bottle, which sits behind my head in bed, so I don't need push my head up with my hand, sit up, and take a sip from a cup that I may spill....one of my little coping secrets!)

Eva
I'm a new patient so the trial isn't for me. But Thank You for posting this info. You never know, it may help me in the future! I actually start radiation on Monday.

It's very difficult to keep up on the the news/clinical trials, etc, in cancer research. Again, thank you for remember us.

Sandy

I was supposed to be in the saliva study but at a different hospital than you Eva, When they found an anneurysm repair failed needless to say I was ejected from the study. That sounds like an awfully big maybe for all of your trouble. Yes, I would say go for it but that would be greedy on my part. My mouth is dryer than a maytag at full heat.

Hi Eva

today's OCF reader has yet another news article about how acupuncture can promote salvia recovery. My prothodontist mentioned it also. Actually with the recent surgery and being unable to swallow, I ironically have plenty of saliva again but I would not recommend it for anyone. Acupuncture may be an alternative to consider if you don't do the clinical trial.
Charm

I had 6 appts lined up before the month started, I missed the one for tomorrow with my Oncologist, Im sure he would have appreciated me missing. Good thing I had the appt card. I have the same problem Christine has with this toothless tooth ache in the spot where the right molar was. I hate to take drugs for it but might end up with some perc or maybe Magic Mouth wash. Like the sond says, somethings gotta give.

Martin was on this Radiotherapy trial that was supposed to reduce the long term damage to the saliva glands, it's still early days but he still gets the dry dry moss tongue. Apparently the treatment Martin went through was trialed in the US but the results were inconclusive and the consultants there thought it didn't work. The consultants here however think it does. I can't remember what the radiation is called, I got so much information that day that I only rmembered what the things did but not the names.
Otherwise, what exactly is Magic Mouthwash? I asked the consultants who said they didn't know what it was, so i looked for recipes on the internet and found several. I showed them to the consultant who said "Oh no! that would sting your mouth and be too painful". So what is it?

My DR has his own formula, he drug store were I got it filled, the druggist had to call out of state for instructions. It works good but I have no idea what's in it. LOL Could be road kill.

Cecilia,

Are you talking about IMRT which stands for Intensity Modulated Radiation Therapy?

Hi David,
I've just looked at Martin's home file and it is IMRT that he went for, he had to have a green mould of his head and torso made and the mould was clipped to the table during the radiation.
We went for that because as he was of unknow primary, this treatment seemed more thorough and target more places. They also said they thought it was less harmful to the taste buds and saliva glands in the long term. It will be a year next month since the first operation so i suppose it's still a bit too soon to judge but martin isn't too impressed. But I think he is doing well he can eat things as long as there is a sauce. That's not bad really.

I would guess that in the last 3 years 99% of us that got radiation received IMRT, at least here in the US. By design IMRT is supposed to limit the amount of damage to the good cells while still damaging the same or greater amount of bad cells as it's predecessor XRT. Generally the ones that received XRT have greater damage to their saliva glands than those of us that had IMRT. Regardless of the damage one receives from either radiation, it may take 2 years for the cells to recover as much as they will.