D-Limonene Clinical Trial for Xerostomia

Ditto to what Russ said. 70 is a lot.

That you went with 70 Gy. You did your homework and found that 60 Gy was questionable. You are no different than the rest of us we wanted this cancer gone the first time with one treatment course and to be sure we got it and hopefully would be rid of it forever. So we did not want to pursue anything questionable we wanted the guaranteed treatment course and so did you. After all, this is a life or death decision time.

AprilWine said:

Thanks wbcgaruss. You hit the

Thanks wbcgaruss. You hit the nail on the head. It is so easy to forget the extremely serious nature of our treatment decisions. Although there are numerous very exciting clinical trials underway to "de-escalate" the amount of radiation, either directly or in combination with immunotherapy, they remain trials. I almost stopped at 66 Gy, that had been the standard dose in Ontario, where I live until a few years ago. In the end though, one comes to understand that with cancer, there is simply no "optimal solution", no "right answer", there are just a set of choices, none of them very appealing.

The challenge of trying to understand a diagnosis, the treatment options, the prognosis, and make decisions all in less time then most of us would give to choosing a new car, is simply unimaginable to those who have not experienced this reality. I am very grateful to my medical team, all of whom offered expertise, understanding, and were generous with advice. In the end though, the decisions must be made. For me, deviating from the "standard of care" treatment offered by medical professionals who devote their professional lives to this challenge, was a step that I could not take.

I am very lucky.So far, my recovery is only really hampered by Xerostomia. Even that seems to be on the (relatively) mild end, at least for now. I have some sensitivity in my teeth to hot & cold. I still feel some minor pain in my throat after eating, but considering that five weeks ago I could not swallow anything except "Ensure", and was essentially bedridden, I'm not going to complain.

 

Five weeks out then you are in the very early stages of recovery and I think all your minor pains and oddities will most likely go away as you improve. Wait till you are 3 months out, six months out, I think you will be amazed at how much better you feel-Wishing You The Best-Take Care-God Bless-Russ

Laura, please give us some details. Why is it that you haven't eaten a meal? Is it a swallowing issue, or do you relate it to something else? If you can give specifics we may be able to help or point you in the right direction.

Take Care God Bless-Russ

Laura, it appears then that your main problem keeping you from eating regular food is lack of saliva. How long has it been since you finished treatment? I am almost 10 years out from my first cancer and treatments and they would be the ones that have limited my saliva flow. I too have very little flow but maybe a little more than you do, not sure, it is hard to compare. If you can swallow well then you should be able to eat regular food. You have to take a bite and then add the beverage of your choice, take a sip and chew mixing the food and liquid and if it isn't thinned enough or moist enough sip a little more of your drink till you get it to a good consistency that you can swallow. It takes a little practice to get the right mix. As far as lack of saliva I have very diminished saliva and when I eat I have to sip in the liquid of my choice to make up for whatever you are lacking. Water doesn’t do it for me but I use soda like Pepsi as it doesn’t diminish the taste of the food since my taste is affected also. You should be able to eat soups and thick creamy soups like potato soup, clam chowder, beef stew, etc. there should be enough moisture there for you. Also, there are different pastas with sauce to eat. Just experiment. There are 2 men on our local support group at the health campus that have no saliva. I am sipping coffee or water all day to keep my mouth moist or chew sugarless gum, something like Trident which has a high level of Xylitol in it which is good for a dry mouth. Also good are Xylimelts which have one side that sticks to your tooth or gum staying in -place so it can safely be used at night while you sleep. Also can be used anytime to help keep your mouth moistened and help urge your saliva to flow. Sometimes it may take a long time for your saliva level to come back and how much you will get back varies by person and also what their particular cancer situation was and the treatment received and the strength and area delivered in. Laura this can be challenging but it can be dealt with. Talk to your care providers and let them know your situation also. They should set you up with a speech therapist which does everything with the head and neck area such as saliva, swallowing, breathing, and anything else in that area. Have you had a swallow test done, you should possibly have a swallow test. When you see a speech therapist ask about a swallow test. Also, see your ENT and let him know the problems you are experiencing. You will find answers if you pursue it a bit but some of this stuff doesn't get back to where we would like to be and we just have to deal with it as best as we can. You may have seen it mentioned before about after treatment, finding your new normal. Below is a link to a video explaining a swallow test--

I myself am going to one 2 times a week during the whole month of October and getting help with swallowing issues. Let me know if you have any more questions. Again provide a little more info if possible such as when you finished treatment and what your treatment consisted of. Any other details that might be helpful such as was your cancer a stage 2, or 3, and in what area was it, such as the tonsil area, neck area, or throat area? I hope some of this helps.

Laura-Wishing You the Best

Take Care God Bless-Russ

NEGU (Never Ever Give Up)

Hello Laura, yes I can chew hamburger or baked potatoes and most anything really. Since your teeth are good I would imagine your problem is literally no saliva. There are a couple of men on our local campus support group that have no saliva and it is definitely a problem. My saliva is greatly reduced but there is apparently enough there to coat my teeth so food does not habitually stick to them. I notice that some foods though will dry my mouth more so and food will stick to my teeth more. I then need to take in some coffee or water and swish it around to loosen things up. Maybe if you take a sip of milk or water or soda, etc whatever works try different things before you eat something and swish it around to coat your teeth maybe it would help. So sorry you are having this trouble. Please run this by your care team maybe they can offer something.

Wishing You the Best

Take Care God Bless-Russ