Author Topic: Dry mouth  (Read 27196 times)

Helen33

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Dry mouth
« on: December 25, 2014, 09:22:44 pm »
I have AL Amyloidosis and have had several chemotherapy regimes but am currently off treatment as am stable.  One of the biggest effects I am living with is a very dry mouth.  I continually have to wet with water otherwise my mouth sticks together and can make me retch.  It means I talk strangely and some people have said it seems that I am drunk eeek.  I am not sure whether it's from medication such as diuretics or whether it is amyloid damage to my saliva glands.  The artificial saliva spray isn't much good as the relief is only momentary and I would need a massive amount of sprays prescribed weekly. 

I would appreciate hearing whether anyone else has experience of this.
Living life with Amyloidosis

patpinchin

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Re: Dry mouth
« Reply #1 on: December 30, 2014, 11:47:29 am »
Hi Helen,

Yes I have a very dry mouth too owing to extensive deposits in my salivary glands. Many years ago, Dr Lachman at the NAC told me that almost everyone with AL Amyloidosis has amyloid in their salivary glands without realising it.  Mine could be clearly seen on a PET scan I had in 2013. When "milked", the salivary glands under my tongue produce no saliva at all and the others very little. Chemotherapy can also cause dry mouth. Some people recover from that others never do, according to my Haematologist.  The lack of saliva heightens my other mouth symtoms which are far, far worse than the dry mouth........nerve damage to the palate nerves causing chronic hypersensitivity which is extremely incapacitating. I have a relentlessly ferocious salty taste coming from my hard palate. It invades my whole mouth and is worsened by talking, eating and most activities. I have had this condition since 2003 and so far have not found any symptom relief. Whilst chemo was successful in lowering my Free Light chains, there has been no regression of the amyloid deposits as they do not regres from soft tissue. Only Dr Wechalekar at the NAC has been interested enough to try and help find me some symptom relief but no success so far. Another NAC consultant told me my mouth symptoms are unprecendented? My quality of life is very poor. For the dryness, I find sucking sugar free sweets or gum helps to stimulate saliva. I use Ricola Cranberry sweets and buy them in bulk on-line. I cannot suck them all day tho' but they are essential if I have to talk.  I have to take drugs to enable me to sleep at night tho' I wake up several times a night with the ferocious symptoms. A mouth rinse of Biotene Moisturising mouthwash helps and enables me to get back to sleep again. Unfortunately the mouthwash does not help during the day. I have read that Biotene gel and spray can help some people with a dry mouth but they do not help me. You can buy all these products on-line. I think they are not available otherwise in the UK. I also avoid sugar in both food and drink. I have strong teeth fortunately, but since my dry mouth started, I constantly have to have fillings because saliva naturally protects the teeth from decay. My dentist ihas been very helpful in suggesting Colgate Duraphat toothpaste as the best decay preventative toothpaste. It is available on prescription. It is also helpful to use a single tufted toothbrush to brush the insides of the teeth after brushing with a Philips Sonicare electric toothbrush. Also recommended by my dentist. Additionally, I use thre different widths of interdental brushes.....they are colour coded and your dentist/hygienist can advise. I floss manually twice each day and once with the Philips Air Flosser. Hope this helps. So desperate for the NAC/GSK new anti-amyloid drug which promises to destroy up to 90% of deposits. Would love to know when phase 11 is expected to open, especially after the recent announcements from the US about the Prothena drug going into phase 111 and also the expansion of  phases 1 and 11 into Europe. Good Luck, Helen, Pat.
Pat

Annone Butler

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Re: Dry mouth
« Reply #2 on: December 30, 2014, 03:09:20 pm »
Thanks for explaining your symptoms so fully Pat. I'm sure people will find your recommendations very helpful. As to the last 7 lines of your post - hear hear!

Helen33

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Re: Dry mouth
« Reply #3 on: December 30, 2014, 07:58:41 pm »
Thank you very much Pat.  I do appreciate the effort you must have put into such a detailed response.  It came as a relief to be honest.  I have been avoiding the dentist because I need some extensive work.  I was going to have implants but then I was diagnosed with this illness and that put paid to that!!!!  I envy you your strong teeth.  I know I am living on borrowed time dental-wise.  I will investigate the toothpaste.

I didn't know there might be a drug which could help us sometime in the future.   I must make an effort to be informed about research. It is very encouraging. 

I am sorry that your quality of life is very poor Pat.  Do you have support to help you through day-to-day?  I am hoping this forum might help us all on a day to day basis as we get to know each other online.

Let's hope for some kind of breakthrough in the new year.
Best wishes

 
Living life with Amyloidosis

patpinchin

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Re: Dry mouth
« Reply #4 on: December 31, 2014, 10:05:55 am »
Pleased to be able to help Helen.

Do take the plunge and go to your dentist. Better get what needs doing over and done with to avoid things getting worse through lack of treatment. All the dental appliances I mentioned,  Duraphat, and hygienist every 3 months help keep the decay from worsening. My dentist is adamant about that.

My wonderful husband cares for me devotedly. I would certainly have gone under without his love and support and that of my family and friends....many of the latter from the Amyloidosis community a couple of whom post on here. Hopefully as the forum expands many more will too. So much mutual support can be shared.


Yes there are new treatments in clinical trials....."novel" drugs which are less toxic than traditional chemotherapies. These reduce Free Light Chains quite quickly and are easier for patients to tolerate. I'll post a link to Dr Wechalekar's slide presentation about them at the Amyloidosis Information day in Sept 2014. Such drugs will not help me as my FLCs are just about normal. A different drug which could potentially help is CPHPC+anti-SAP antibody which has been developed over many years of research by the wonderful Professor Sir Mark Pepys and his team at the NAC. Sir Mark hopes that this drug holds the key to improving the quality of life for sufferers. SAP, or serum amyloid P component (you are injected with that prior to the SAP scan) is always present in all amyloid deposits.  The CPHPC drug developed by Sir Mark removes all SAP from the blood but leaves some SAP in the amyloid.  Antibodies to SAP can then be safely given to target that residual SAP.  Binding of the antibodies to the amyloid deposits then triggers the body's natural clearance mechanisms to get rid of the amyloid. BINGO! This treatment targets and destroys amyloid deposits quite quickly in animal models. A good friend who was present at the Info day reliably informed me, that in his presentation about the trial for this drug, Professor Hawkins expressed with considerable excitement how well phase 1, testing for toxicity and safety, had gone!  That just has to be a good sign. .  GSK, the drug company which licensed Sir Mark’s invention and is developing the drug has already received Orphan Drug designation for it from the European Medicines Agency, which has also adopted it as one of the first candidates for "adaptive licensing", a new scheme for fast tracking new treatments for unmet medical needs.. I will post the link to Professor Hawkins' presentation about the new drug too. Hope this info is useful, Helen?


Link to Dr Wechalekar's slide presentation at the Myeloma UK Info Day, Sept 2014, about novel therapies.
http://www.myelomatv.org.uk/index.html?vid=109246953


Link to Professor Hawkins' slide presentation about the progress of new anti-SAP antibody drug. Sept 2014 at the Myeloma UK Amyloidosis info day.
http://www.myelomatv.org.uk/index.html?vid=110129478
« Last Edit: December 31, 2014, 08:04:52 pm by Miriam Vered »
Pat

patpinchin

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Re: Dry mouth
« Reply #5 on: January 01, 2015, 12:21:12 pm »
Oh Miriam, thank you so much for editing my post. The last 5 lines are truly a golden nugget. You have made my day and I feel sure that anyone reading the exciting news will be equally thrilled. The EMA of designation of Orphan Drug status and its adoption as one of the first to be accepted for fast tracking signals great confidence. Massive thanks to Sir Mark for his extraordinary work.  :)
What say the rest of you on this forum?
Pat

Annone Butler

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Re: Dry mouth
« Reply #6 on: January 02, 2015, 11:38:17 am »
Just to add that my husband finds the Durophat toothpaste very good too. He also uses interdental brushes which are readily available at supermarkets. It does seem to be the case that the chemotherapy affects tooth strength and his have never been great anything. But these things do help.

Annone Butler

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Re: Dry mouth
« Reply #7 on: January 02, 2015, 11:42:04 am »
Sorry the "anything" should be "anyway" in my previous post. And very good news about the SAP antibody drug. And I should add that the Myeloma UK InfoDays on Amyloidosis are well worth attending if you can. Lots of information.

Helen33

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Re: Dry mouth
« Reply #8 on: January 04, 2015, 12:32:04 am »
Thank you again Pat.  You are clearly very well informed and I am grateful that you are passing on someof this information.  I feel like a real beginner and find it quite hard to get my head around some of the stuff.  I didn't know there were information days.  I have been very much alone throughout as even the Specialist nurses and my ex-consultant never used the term Amyloidosis but would rather mention myeloma.  There was no literature in the hospital of any kind that mentioned Amyloidosis.  I felt very alone.  It has all changed now and I have a good team working around me and with me. 
I feel quite excited at the possibility of new drugs to deal with amyloid.  I hope I can benefit from it but I suppose it wil not be in my lifetime.  Wonderful for the next generation. 

Thank you Annone for your encouragement about the Durophat toothpaste.  I use the interdental brushes and have done for a long, long time.
Living life with Amyloidosis

patpinchin

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Re: Dry mouth
« Reply #9 on: January 04, 2015, 04:27:03 pm »
Hi again Helen,

There are many freely available and informative leaflets at the NAC relating to various aspects of Amyloidosis and how to manage living with it.  They are in racks on the walls. There are also leaflets about the Information days which have been held for the last few years in early Sept. Most NAC Consultants provide presentations so you receive the latest information about new treatments and much else besides. There is a Q/A session, a patient experience slot and opportunities for sufferers and families to share experiences. If you can't find the info at the NAC someone at the desk will willingly help you. It is necessary to apply in advance and there is a fee. You can apply here: Nicola.Ewart@myeloma.org.uk
As for the new drug.....oh Helen I hope it wil be available in my lifetime and I am older than you! Go back and re-read the posts about fast tracking. Promising news.
« Last Edit: January 05, 2015, 07:27:37 pm by Miriam Vered »
Pat

Mark McConway

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Re: Dry mouth
« Reply #10 on: January 04, 2015, 08:07:53 pm »
Hi Helen,  I see that Pat has given you a really good account of how she's dealing with her symptoms and I just wanted to add two tiny fragments of information that may or may not be useful to you.  Firstly, I was originally diagnosed with AL Amyloidosis in 2011 and had the CTD chemotherapy regimen for 4 months.  Thankfully, the treatment halted the progress of the disease and I'm happy to say that, generally speaking, I'm leading a pretty normal life at the moment. 

However, during the chemotherapy - and for a while after it ended - I did experience the dry mouth that you've described but perhaps not to the same extent as you and Pat. For my part, I found that water would actually cause me to retch when my mouth was dry like that.  The thing that brought me some relief and became something of an addiction for around 5 weeks was 'roll mop herring in the pickled marinade'.  This probably sounds disgusting but it was effective at 'firing' saliva into my mouth again.  Similarly, things like pickled onion or beetroot had a similar effect.  (Have you tried any of this Pat?)

« Last Edit: January 06, 2015, 09:08:01 am by Miriam Vered »

patpinchin

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Re: Dry mouth
« Reply #11 on: January 06, 2015, 12:17:50 pm »
Hi Mark, I would definitely agree with you about water. Whilst the pickles are not to my taste, I can see that they would stimulate saliva which is what you want. Experiment a bit Helen and see what kick starts salivary juices for you.  I do eat beetroot but only in its natural form as I have to avoid anything with even a whiff of sugar because of my vulnerability to tooth decay. However natural sugars in fruit are allowed by my dentist and I do find that grapes and pineapple chunks stimulate the most saliva but not that much as amyloid has infiltrated all my salivary glands. Also it's possible to keep both in the mouth for a short while and this helps mask the ferocious salty taste sensations from my damaged nerves. For the most part I need to suck sugar free cranberry sweets as previously mentioned to mask the noxious taste.  It must be difficult to understand how such a seemingly minor symptom can engulf me and rule my life. Believe me it does and is by no means minor. Akin to chronic neuropathy I guess but in the mouth. Throughout my life, I have always been a determined persevering person not someone to give in or give up easily, but this relentless overwhelming symtom has truly engulfed me.
Pat

Helen33

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Re: Dry mouth
« Reply #12 on: January 06, 2015, 01:26:50 pm »
Thank you Mark and Pat.

  Pickles - yukkk :)  I can't eat the sugar free things as they cause bowel looseness which I can well do without.  I think I have amyloid in the gut and I only just about manage to get out and about safely if you know what I mean.  I can't afford to do anything to make it even slightly worse as I would have to remain house-bound due to bowel incontinence. 

I have an appointment at NAC next week and am not looking forward to it because I am afraid I might need further treatment eeeeek.  Fingers crossed that I get positive news.  I am going to India for the month of March and have been given the go ahead.  If I need treatment it can wait until I come back.  However, I'm not at all confident in further treatment because the last lot rendered me practically immobile.  I could only walk about 5 paces.  As soon as I came off the treatment, I was able to swim a mile two days later!!!  Everyone was astounded, including me.   I have many plans for 2015 including many trips with my partner and brother and sis-in-law.
Living life with Amyloidosis

patpinchin

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Venue for Info day
« Reply #13 on: January 06, 2015, 02:24:40 pm »
Schools, universities (and probably hospitals too) all charge for the use of their premises and usually make no exceptions however worthy the cause.
A kostenlos location would need to be sought. A hire charge is something an info day could do without!
I think that is why Mark suggested a hospital because of his experience talking of organising and speaking on Amyloidosis to staff there.
Someone with an attachment to a suitable centre might be able to get around a hire fee tho'. Again the forum may yet reveal that.

Good luck with your imminent appt Helen. I hope you get a nice surprise.
Pat

Lesley

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Re: Dry mouth
« Reply #14 on: January 21, 2015, 07:25:30 pm »
Hello all - lovely to 'meet' you - some new some I know (my lovely pat)
I've not read everything as just finding my way round
I too suffer with a dry mouth. I'm told take a drink then by none  Amy sufferers!! Oh why didn't I think of that!
Of course it doesn't work!
Hugs to all
X