Hey gang hope everyone's safe and not going crazy locked up in the home.
I was diagnosed with CLL about a year ago, about a year and a half ago I got this mouth ulcer. It was cut off and biopsy. Came back negative for everything, had blood test for immune system done and it all came back fine. Since it was cut off the cut has not healed. Since than I have 2 more mouth ulcer that have popped up and as the first have not grown nor have gone away. To get a second opinion, I saw another ENT who suggested that it might be due to a slight weakness of my immune system do the the CLL which is using the mouth ulcers and keeping them from healing. During my last visit with my Hematologist, about 6 months ago, I brought this up and asked if their could be a link, he doubted it. Has anyone else suffered with mouth ulcers that done go away for no reason?
BTW, my vitals are not bad and not going through any treatment at the moment.
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Michael199
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Michael, there is a possibility (don't know in what country you are) the CLL Dr. you see is not as familiar with CLL as a specialist who sees more CLL patients. There are CLL hematologists/oncologist who have more experience with CLL specifically.
If you are able and interested in getting an evaluation and/or getting a second opinion in regard to your specifics, check out cllsociety.org/toolbox/cll-... for possibilities.
Further, that site has other possibilities for you to get online evaluation (if you are U.S. or to ask the question of a Dr. on the site--and Advice column (no matter your place of residence. . I hope this helps.
No I have a friend who happen to be a noted cancer researcher and he referred me to a CLL specialist. He’s the second one I’ve went too. The first guy was less competent than Doctor Nick from the Simpson’s.
So, you trust your Dr. and that is good--is there any ability just for a 2nd opinion of the ulcer treatment? The suggestion "Len" gave you for looking into were not specific to your situation, but were there possibilities of what each of them has done to clear the ulcers they had? There have been many suggestions over the years by other who have found relief from different mouth washes.
Best wishes. You will most likely receive some of the options used by others as they come on line. You are in UK, then, and that information will help others to identify and help you.
my blood test from 1998 indicates that i had cll back then. although, i was formerly diagnosed in 2004. so, in short, i've had it a long time with no real complications except extreme tiredness and...mouth sores. my oncologist told me that they would never heal on account of my immune system..my blood work isn't that bad! so i battled them for years.. now i take 3 grams of AHCC daily, on an empty stomach, and no more sores.. it is amazing. i hope this helps. i buy the ahcc from Quality of LIfe. this might be worth a try...i do not think it will hurt you. my oncologist said it was ok...his assistant takes it too!
Hi Michael... just a little thing... make sure your toothpaste does not contain 'lauryl sulphate aka laurel sulphate ' as this has been linked to mouth ulcers... this could be preventing the healing process... most toothpastes and mouth washes contain this.. sensodyne pro enamel is one that does not !
Have you had your IgG tested? If it's very low it could explain your body not fighting these sores. I'm sure you've done salt water, with or without baking soda. Something to ask your doctor about is l lysine, but really ask about using it. It can help some with mouth sores, but it can also cause side effects and can interact with some drugs.
Hi there Michael, I'm going to give you a blow by blow account of my experience of a similar condition. Bear with me, there are lessons here which I hope will help you.
Like most in the UK I'm in the medical care of the NHS and have private dentistry. The great strength of the NHS, apart from the fact it delivers free treatment, is that patient records are centralised and available to any NHS practitioner. We'll see how that worked out in my case.
I had two bouts of painful ulcers in the mouth a couple of years ago. That was 12 years after CLL diagnosis, with lymphocytes over 150 and before any treatment. My dentist gave me ABs and a week later, seeing no improvement, referred me to an oral surgeon. He did a biopsy which led to the diagnosis herpes virus, with opinion divided as to whether it was H simplex, which causes cold sores, or H zoaster which causes chicken pox and shingles. Either way, oral herpes had confounded the expert.
So he sent me away with a week's supply of Aciclovir and a follow up appointment several weeks later, at which I presented with... mouth ulcers. The drug had quickly cleared the original ulcers, and this second lot were just a new batch of the same. The oral surgeon - the expert - had no solution other than to prescribe a further 7 days of Aciclovir and request another follow up some weeks later. I left there perplexed, but what could I do? I took the tablets, and again the ulcers disappeared.
After a phone call with my sister, a semi retired dentist, I went to my GP, who had the brilliantly original (that was irony) idea of looking up my latest blood results on the centralised system. He then confirmed exactly what my sister had told me: someone should have prescribed you daily Aciclovir months ago!
Indeed someone should, and I have been on daily Aciclovir ever since.
Lesson 1: Don't rely on medics to talk to one another, they are too inclined to dispense their expertise wearing blinkers.
Lesson 2: viruses can reach places other pathogens can't and experts don't expect.
I reviewed the replies and found no mention of a prescription mouthwash commonly referred to as “magic mouthwash “. The label on mine lists 3 ingredients: diphenyl, lidocaine and alamag. I have used it for almost 10 years with great results, even for accidental bites on the inside of my cheeks. I sometimes chew too enthusiastically.
My first indication something was wrong was a mouth full of canker sores. I mean all over. Extremely painful. Finally an endodontist told me to get a blood test because my immune system must be on fire. I could only drink things with a silicone straw. I have done much better since I had infusions of gazyva. The sores was not the reason I was treated. I recommend asking for a prescription of magic mouthwash. Only use toothpaste that is sla free. I use kanka on them whenever I get them now. I still get them but not as much. Don’t eat acidic foods like oranges or at least limit the number.
I do believe, as did the endodontist, the immune system is the cause.
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