Hi
I don't have a dx of cancer as such, but do have concerns. Currently being investigated by 6 different consultants from dental through to pulmonologists because of my Sjogrens (of 8 years) seemingly flaring currently. Dental problems have been the biggest ones - constant dental work despite various attempts to slow down the progression of caries. But my primary concern since the beginning of the year and what I'm being rather rapidly investigated for, are parotid gland swelling, pain on the right side of my face and most significant - constant brown/bloody saliva regardless of eating. My dentist can find no obvious source of bleeding so we're presuming this is coming from another source. My query is what in your experience is a likely source for this problem and if a concern for cancer - what type? I'll probably know for definite some time next month as I have a sialogram on Tues with an ultrasound within the next 2 weeks, but I'm the type that likes to try and find out in advance what the likely prognoses might be. I have good medical knowledge (medical secretary) and would appreciate some in-depth info or links. I've searched endlessly on the web for info on 'bloody' saliva but can't find any info other than in relation to gum disease which I apparently don't have. Should perhaps state that I also have lupus (mild), fibromyalgia (severe) and hypothyroidism (150 mg thyroxine controlled) all for the same length of time. I'm 44 and have had no prior problems in this regard. My Sjogren's up until this time was only causing minimal problems and I'm on no treatment for either it or the lupus currently. I am however on narcotics (OxyContin SR) for the fibro.

Any suggestions and info would be extremely appreciated as I'm desperate to get some solid info on what my Consultant might be considering as I won't see him until the tests are done/results through etc which as I say will most likely be the end of the month. And I equally appreciate you can't make diagnoses on this site, but I'm just looking for differentials to ponder! :-)

Thanks
TR

Dear TikkiRo

I like your name!

You appreciate that one can't make diagnoses on this site. I always try to give an honest answer to a patient when asked to explain the possibilities/risks. I guess a straight question deserves a straight answer. My expert colleague says that, the possibility to be considered is, I am afraid, that of a lymphoma having developed in the parotid gland. You are clearly being thoroughly investigated for that possibility. You will already know that this possibility exists from your internet web searches.

The following website links have information that puts the possibility into perspective:
Lymphoma in Sjogren's Syndrome , Sjogren's Syndrome
This website gives the patient's view of treatment
The Patients Forum On Tumors Of The Parotid Gland

Best wishes

Vinod :coffee:

Hi Dr Joshi
Thank you SO much for your candid reply - exactly the sort of info I've been trying to get. You're actually not the first to suggest the possibility of lymphoma - the other person being a rheumatologist friend in the US, although he was more stating that in general those with SJS are more prone to this particular form of cancer. However, I'd sort of dismissed the possibility of it only because in all my reading of literature about lymphoma I again couldn't find any mention of this specific symptom, so presumed it was an unlikely cause. The rapidity of appts/tests did renew a level of concern though as even my GP had remarked on how fast things were moving. I just appreciate having a better idea of where my consultant is coming from in wanting specific tests done and to be better prepared for such a dx should it arise. I honestly understand perfectly that you're neither diagnosing nor putting that forward as the only differential - just the most likely suspect, which as I said, is exactly what I wanted to know.

Thanks for the compliment on my name (presume you meant my real one not the TR nickname?) - comes from being born in Sri Lanka (father in RAF) and my parents naming me after a girl they met there with that name. Not too many of us around!!

Anyway - thank you again, and I'll certainly keep you posted once I get the tests done, because I believe everyone's experiences may differ and each provides other people with better knowledge on their own concerns, which is why support groups/message boards are so valuable.

TR

NB: EXCELLENT sites - again, just the type of info I was looking for. Thank you SO much.

Hi TikkiRo

Both the nickname and the real one are

One of my colleagues has asked me to tell you that an Ultrasound and MRI is often done to scan for lymphoma of parotid. Once these investigations are done, a FNA (fine needle aspiration) would confirm the presence of lymphoma or not; sometimes the FNA is done guided by ultrasound.

I have been to your website for the Fibromyalgia support group you set up - impressive work. How's your fibromyalgia now? I have some questions for you : Could you tell me what precautions you have been taking with regards to preventing decay in your teeth? What did you find helped with your dry mouth? Your experiences might be of help to those who suffer the side-effects of radiotherapy in the mouth

Best wishes

Vinod :coffee:

quote:

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Could you tell me what precautions you have been taking with regards to preventing decay in your teeth?

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Ooopss - what a question to ask me - you're going to HATE the answer! I am inherently lazy about my dental hygiene although am rapidly working on improving it. I have had an almost lifelong addiction to Coke (the drink not the drug (although am beginning to think they're equally addictive:-)) - and up until fairly recently enjoyed eating sweet stuff - certainly not excessive - talking about 1-2 biscuits a day and the rare cake/buns etc but my total downfall in respect of my teeth is another addiction of 8 years now to a particular sweet - Mintolas (now called mint munchies!). These I appreciate are the worst possible types of sweet to be constantly eating - well, actually I'm now down to sucking the blessed things as I have sweet sensitivity on both sides - but I can tell you, it's not an easy addiction to overcome either and it's been tough. I had eaten up to 2 pkts a day until about 4 months ago, when these dental problems started big time, so have managed to cut down to 1, but please don't anyone ask me to stop them altogether. The other side of the coin ironically for me in all this, is that I've already lost 10 pounds weight since December and I was already fairly underweight at 7st 10 (height 5, 7) - now down to 7 to 7.2. I maintain most of that weight loss has come about purely because of having to cut back further on my sugar intake as well as any food requiring chewing - not by choice - just purely because of the dental problems. So, although I do respect the fact that both these addictions are deadly in respect of my teeth, I'm trying everything to not have to give them up :ashamed:

However, my major methods now in dental hygiene are primarily use of Fluorigard (prescribed) twice a day mouthwash and trying hard to ensure that I at least swill a bit of water around my mouth after eating a sweet to try and cut back a shade on the residue. Brushing is uncomfortable because of the sensitivity even if I use Sensodyne so prefer not to do that so much. I should perhaps also say my other downfall in all of this is a longterm intense dislike of water - believe me, I've tried everything possible to change that and am seriously even considering trying hypnotherapy or something as I appreciate it's not healthy BUT I hate the stuff in every shape/form. When I've been on drips, the staff have always had to relent and let me drink Coke to get my fluid intake up enough to come off the IV. I often joke that if I was lost in the Sahara with tons of water I'd still die of thirst - I'd be looking for a Coke tanker .

My mouth is driest in the morning obviously, and the one thing I've found absolutely wonderful for relieving it is Honeydew Melon - few slices of that and it starts things off seemingly enough for me to cope with eating at any rate. And the constant snacking on the sweets while not good for the teeth actually does seem to keep my mouth more moist. So for others, perhaps sugar-free candies might be as useful. Unfortunately they just don't hit the spot for me - it's the mints or nowt!

(Any wonder I'm trying to get to do a Masters on Addiction?)

My fibro has been its worst this winter too - but therein lies the other problem. With 5 conditions and 3 similar ones it's hard to tell what's causing what. I put my swollen salivary glands down to my fibro for years thinking I just had TMJ problems and that these hard lumps were just muscle swellings which many FMS people do get. Can't believe I never ever connected the problem with my salivary glands even though it was always worst just as I started to eat. And this for me seems to have been a major issue. Putting symptoms down to the wrong condition and thus letting things perhaps sit much longer than needed. But GP's also need to be more aware to - the classic you get from some when you voice yet another complaint is """Oh that's just your fibromyalgia""" - thankfully I've an excellent GP who is more than willing to listen to my own views on what may or may not be my FMS.

So there you have it. Thanks again for the additional info - quite looking forward to seeing what the test results show. Thanks too for the encouragement on my own website - much appreciated, as I continue to strive to help others as much as possible on that one at least. I equally appreciate your willingness to get involved to this extent and wish there were truly more professionals like you.

Well - ended up having both ultrasound and sialogram today one after the other. Seemed to certainly be something on the first - the technician went off to get a doc, but he was going to be in a meeting all day apparently, so she asked me to return after the sialogram. The doc doing it went off to check on the ultrasound findings, and then returned 10 mins later with the said 'busy' doc who turns out to be the TOP guy in the dept - they conferred, he asked me a few questions, said that I was a bit of a mystery to them, and that was that. The sialogram went incredibly well contrary to my concerns about it, but I wasn't given much indication of the outcome. From what I've seen online though, I'd say my glands are fine - didn't seem to be much evidence of that sort of speckled/scattered appearance - they looked fairly solid and complete to me at any rate with good dye uptake. So just a waiting game now until the Consultant calls me back.

So perhaps I'm going to be fortunate and not have to cope with any difficult diagnosis as yet - but at least I have a couple of baseline tests to work with if nothing else, which may prove useful in future years.

I'll keep you updated anyway.
Thanks again
Romayne

Hi TikkiRo

The problems related to a dry mouth, and the complications it causes for the teeth and swallowing, are common to both Sjogren's and radiotherapy for mouth cancers. Hence your questions and experience are valued.

You may find more advice on the complications caused by Sjogrens through this search I did at The Lupus Site Message Boards. You could join their board and so get answers from their members with Sjogrens. Do pass along any tips you come by there.

I do appreciate your sharing information that might be useful to other sufferers of a dry mouth. So make yourself at home.

Best wishes

Vinod :coffee:

Okay - not sure if you'll have the answer to this one as it's probably not something most would want to know, but I'm curious as to the 'clearance' time of saliva - basically trying to ascertain whether what you eat gets absorbed into your saliva in any way and perhaps colours it for a time afterwards. Reason being that I just wondered if my constant chocolate nibbling may have anything to do with this current 'brown' saliva I've got. Now I personally would say no, because it's like this first thing in the morning, but interestingly I happened to be talking about it to my brother yesterday - he sometimes would eat those same sweets I mentioned - and he said he'd had to spit out about a half-hour after eating one day because he felt his saliva was very thick afterwards, and he said his was dark coloured too. Just made me wonder how much of that might be an element in some way. I actually feel both he and my mum have swollen parotid glands but perhaps that's just because I'm looking so much at my own at the minute!!

Any suggestions on this one?
Thanks
TR

Hi TikkiRo

I don't think there is a 'clearance' time of saliva, but there a stimulated saliva flow rate used to study saliva function.

Normally, what is eaten tends to get washed away by the constant flow of saliva. Your habit of constant chocolate nibbling would stain your saliva. And if there is not much saliva flowing, your chocolate-flavoured saliva could still be in your mouth or back of throat the next morning! Especially if you are not brushing your teeth too well :banghead: (Note: To clear thick saliva from the back of the throat, try gargling with warm water . A pinch of salt (1/8tsp) and two pinches of baking soda (1/4tsp) in a glass of water helps thin the saliva)

Perhaps your brown saliva is actually just chocolate-saliva!

Best wishes

Vinod :coffee:

quote:

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Perhaps your brown saliva is actually just chocolate-saliva!

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HA - wouldn't that be a medical first!!! I could just see it too - all these poor docs running rings round themselves trying to find an ulterior source to this, and all the time it's my addictions causing it. Extremely interesting to know that though as it may well explain the problem - now, whether I could forego my addiction for a few days to check it out or not is another question. Think to be fair to the medics though I probably should - really don't want them tirelessly pondering on the source of this otherwise. :banghead: Rather do that than have to own up publicly to that one perhaps!! Although the other side of the coin is education - may help them to be able to figure it out with future cases perhaps.

Thanks for those tips though on how to overcome this thick saliva issue - that's a huge help, because it's truly choking me some days and not at all pleasant.

I'm still waiting to get proper results from my tests last week and ironically because I'm seeing a dental consultant too I've another sialogram to go through next week (another hospital) so it will be interesting to see whether interpretation is the same on both.

Keep you posted and thanks again
TR

I had awful problems with Dry Mouth since completing treatment for base of tongue cancer in July 2010. Constant drinking, gels, sprays and synthetic saliva’ 24/7/ became unbearable. I found in the US a Colonel Richard Niemtzow who discovered, developed and still practices his Dry Mouth treatment in Maryland.USA. He also created battlefield acupuncture and is the world renowned authority on these treatments.

I exhausted places in the UK to be treated with his protocol. so visited him July 9th, 2011 and within the first of only two sessions was able to produce saliva again. No more gels, sprays and synthetic saliva since this date and unbroken sleep since.

I was profoundly affected at the results of the treatment so started in the UK The Dry Mouth Foundation. www.drymouthfoundation.org. but you could visit the colonel via his website www.n5ev.com

Let me know how you get on.

Terry Gannon.
Dry Mouth Foundation.