D-Limonene Clinical Trial for Xerostomia

AprilWine

Hello Friends:

I was diagnosed with HNSCC P16+/HPV cancer in January. Completed 70/56 Gy (RT only) on April 13, 2021.

With the permission of my medical team. I decided to replicate the following clinical trial (minus the Chemo which I did not require) that is ongoing at Stanford during my treatment. It is very, very early, Phase 1. The hypothesis is that a well known food additive made from the skin of citrus fruits, primarily oranges, may offer some ability for Saliva gland cells, especially progenitor and stem cells, to potentially survive the brutal radiation assault.

There is no human evidence yet, and mouse models are not too reliable as rodents do have access to another pathway to initiate the signalling needed for stem cells to rebuild damaged saliva glands. That having been said, the data from the phase 0 mouse models is encouraging.

I have been taking d-limonene at the median doses described in the clinical trial since the week before I started my RT. I failed to take any the week after RT ended as I was simply too sick to swallow much of anything. For the remainder of my recovery I did manage to consume at least 2 grams per day, often by cutting the pills open and adding the liquid to my Ensure+ drinks. I am now back to swallowing the pills and will continue for at least six months.

I am now six weeks out of treatment and generally doing well. Experiencing some light to moderate "Dry Mouth", (Xerostomia) and a bit of swelling on the left side of my face. I had one Base of Tongue tumor (small, 11 mm) and two affected Lymph Nodes on the Left side of my neck.  

I was radiated (Tomotherapy) on both sides of my neck, 70 Gy on the left and 56 Gy on the right, plus 70 Gy to the base of tongue tumor. That is a great deal of radiation damage and xerostomia is generally "baked in" at that level of toxicity.

I was not expecting any sort of miracle cure for dry mouth from D-Limonene. Given that I am at least experiencing grade 1 Xerostomia, I would not call it a massive success to date, but six weeks is not long enough for the stem cells to even begin repopulating the glands, so I remain hopeful.

https://clinicaltrials.gov/ct2/show/NCT04392622

wbcgaruss

Well Welcome AprilWine

To the H&N forum, we are glad to have you. You certainly went through some brutal treatment. I wish you much success with your clinical trial and thanks for sharing it with us and thanks for being a pioneer with it to further help possibilities for others. Wishing you the best-Take care-God Bless-Russ

Logan51

Yep

Ditto to what Russ said. 70 is a lot.

AprilWine

Logan51 said:

Yep

Ditto to what Russ said. 70 is a lot.

70 Gy is typically 35 fractions

70 Gy was delivered in 35 "fractions", meaning I had 35 treatments. It was very toxic, but it is the "standard of care" dose for most HNSCC patients. I'm definitely glad it's over. I was going to quit at 60 Gy (30 treatments). The difference in toxicity is dramatic, but there is not yet sufficient evidence to show that 60 Gy is sufficient. The trials that have been done are very close, and I do regret not stopping at 60 or even 66 Gy.

wbcgaruss

It Is Understandable

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

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.

 

wbcgaruss

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.

 

AprilWine You Are Only

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

nacher2

I would like to know how long people are waiting before they can eat. I havent had a meal since Easter. All I can get down are protein shakes and some smoothies. My tongue is so dry even though I use biotene. Any have a time frame? Thanks laura

wbcgaruss

https://csn.cancer.org/discussion/comment/1700886#Comment_1700886

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

nacher2

https://csn.cancer.org/discussion/comment/1700898#Comment_1700898

My salivary glands are not producing enough saliva and my tongue is dry as a bone. I was hoping that I would be past this by now, but I am not. Just wondering what other peoples experience has been.

wbcgaruss

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--

https://www.youtube.com/watch?v=dRvYL_TAtKI

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)

nacher2

I finished treatment in June and they told me 3-4 months. I am probably being impatient, but I am very hungry and protein shakes just dont cut it. I dont have a problem swallowing; I tried some cottage cheese a few times and I had to drink it seems like a gallon of water just to get it down because it wants to stick to my tongue. I drink water all day and I do drink some pedialyte. I tried coffee because I miss it but it just dried my tongue out so bad. I do use biotene but that is short lived. My ENT said it could take a year; I am so bummed out about that. I do have some taste buds. My cancer treatment was for malignant neoplasm of the 2/3 of my tongue (Stage 1 and 2) and it was 36 treatments. I also had 6 weeks of weekly chemo (Cisplatin). Thank you for your encouragement; I am just going to try different things. I can do Sherbet, ice cream at this time. Also my teeth feel weird, like I cant chew well. The dentist told me that my teeth look good and they feel weird and gritty because I dont have enough saliva. I have tried a saliva substitute for dry mouth that she recommended (NeutraSal) but I havent noticed a difference. Can you chew hamburger or baked potatoes? Thanks Laura

wbcgaruss

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