Hi Everyone
I've recently changed dentist and she has noticed that I have a very dark palate - almost black in places. My previous dentist had never pointed this out. I've visited the Royal Dental Hospital today for an initial consultation. I've created quite an interest because none of the consultants or doctors there have ever seen a palate like it. They took photos of my palate and they will be soon whizzing around the world for comment. My toes are also quite bruised since my BMT in 2000 and they took photos of those too! (how many people before me have ever had photos of their toes taken in a dental hospital?!)
Has anyone else noticed a darkened palate and if so what was the diagnosis/conclusion please. I'm not experiencing any pain or concerns about it - just very curious.
For the record I was diagnosed with CML in 2000, underwent a sibling matched BMT in 2000, CML came back pretty quickly so went onto the Glivec trial (STI570) and immediatley reached a molecular response. Still 0% after 9 years of Glivec.
Many thanks in advance for any responses.
God Bless you all and thank God and all the administrators for this website
Take care
Peter
You are here
Dark Palate Anybody?
Hi Peter
Not a dark palate, but certainly a "Dark Patch" on the end of Ted's nose. It appeared within a few months of starting 800mg Glivec about 6 years ago. It is still there - it has not changed or got worse in any way. I think others have noticed dark patches in/on? their skin as well so we assume it's a side effect of Glivec. Photo's of your palate around the world eh? This must be your 15 minutes of fame.........!
Bee
Hello Peter,
good to hear from you. I have not heard of anything like this but I will ask around and let you know if I get any comments. I am glad that imatinib came to your rescue and is still working. Did you ever consider DLI from your sibling? Are you treated at Liverpool Royal? Take a look at the Newswire under Jan 25 where I have posted news about a vaccine trial in those that have low PCR.... although it obviously needs a larger trial it reads like it has been pretty successful so far. We move on towards cure ;o)
very best wishes,
Sandy
Hi Sandy and Bee
Many thanks for your replies - lovely to hear from you and hope you are both keeping well.
Hope Ted is doing welll and responding to his treatment. Positive thoughts play a big part in our success and so does our faith.
Thanks for the link Sandy - interesting and hopeful reading. I'll discuss with Prof Clark at the Royal
DLI was considered but not initiated because my response was so good to Glivec (I think! It all seems so long ago now).
We keep saying we'll meet up Sandy next time you are in Formby - hopefully 2010 will see that happen. Please email me when you are coming up next and we'll get together.
Peter Miles
Southport UK
Dear Peter,
I can't remember where, but I'm sure that I read that a dark palate can be part of Glivec side effects,
Barbara
Hi Peter
Always look out for you at Royal - glad to hear that you are still doing fine on Glivec.
Hopefully will bump into you again sometime soon for a chat.
Take Care
Julie
Julie Valentine
Hi Barbara
Many thanks for your reply - trust you and your family are well.
That's interesting thanks - I'll take a look at the Glivec read up.
Take care
Peter
Peter Miles
Southport UK
Hi Barbara
Thank you - you are a star! The possible answer was on this wonderful website all along! I've referred Prof Clark at the Royal Liverpool to it.
http://www.cmlsupport.org.uk/?q=node/995
Good to know that sometimes we are one step ahead of the experts!
Many thanks
Peter
Peter Miles
Southport UK
I'm glad that I could help!
There are a few patients in Canada with the same problem too.
Things here aren't too bad - I'm fine but am very worried about my 9 year old daughter who's stopped eating & has lost 3 kg in the last couple of weeks; she's going into hospital on Monday for a gastroscopy - I'm hoping that they find an ulcer because if not she might have anorexia (& then i'd feel guilty, because maybe she's been worrying about me having CML).
Hi Barbs
Thank you for your reply. Please don't feel guilty - none of us wanted to go on this journey and so we have to take one step at a time. Now I'm on this journey though it is so reassuring to have so many friends (real and virtual) to share it with. I couldn't have got through all of this without everyones wonderful support and I thank God every day.
Hopefully you will get good news about your daughter but if not you will have to support each other through it and I'm sure you will get there.
Are you in Canada? My sister lives near St Catharines in Ontario and I vist there quite often
God bless you - take care
Peter
Peter Miles
Southport UK
I typed "dark palate glivec" into Google & it came up with a forum called "talk blood cancer.com" it's a Canadian site - they were joking that the problem only affected Canadians!
here's the link :
http://talkbloodcancer.com/index.php?option=com_fireboard&func=view&cati...
You'll see that Sandy & Anjana gave their views on the problem & some useful information.
I live in France - I used to be quite active in the groups but lead such a busy life (thanks to Glivec) that I don't get much time these days! I was elected as a village councillor 2 years ago & it takes up a lot of my time (with my 3 kids too).
I came to the Manchester meeting a few years back & think I may have met you "in person"!
Bonsoir Barbs!
Many thanks for your helpful reply. I'm in pretty much the same situation - very much into a very active and busy life and don't seem to find as much time to contribute to this forum as I would wish (New year resolution - I WILL CONTRIBUTE MORE!)
Sorry I didn't make Manchester - wanted to but was full of flu at the time. Hopefully we will meet up one day. Until then - à bientôt!
Take care
Peter
Peter Miles
Southport UK
Dear Peter,
I had this information for a CML nurse specialist.....
"We did have one patient on imatinib with a darkened palate several years ago. It was biopsied, non-malignant, and just observed since. Cause was never clear. It was a lesion with increased pigmentation.
My patient’s path report notes that a blackened palate can be caused by chemo such as doxorubicin, busulfan, cyclophosphamide, and 5-FU along with multiple other drugs.
Given that she had a transplant, there are a number of possibilities re causation."
hope this is of some more help.
Sandy
Peter
One of the CML girls in Australia also had the same side effect.
Like yourself - all her consultants and orthodontist etc had never seen this effect or thought it was a known side effect of glivec
You are only the other person I have heard of with this issue
I will contact the other person who had the same experience and see how she fared in the long term and get back to you.
This issue was posted on the Australian Leukaemia Foundations
Talk Blood Cancer which is a bulletin board and has a CML Forum www.talkbrookcancer.org
Sue
Hi Sue
Sorry I missed your posting hidden amongst the others but thank you.
If you have any further info from Australia I would be very interested to hear (patient confidentiality allowing etc)
I'm due to see my Haematolgy Prof mid Feb and the dental hospital are taking a biopsy early March. I'll let you know the outcome.
Take care, God Bless,
Peter
Peter Miles
Southport UK
Hi, I am a wife of a CML patient diagnosed in 2002 and he was in complete remission in 2003 until now. I am at peace to know that its not only my husband who has the same concern, which is having a dark palate which according to several specialists we already consulted is not considered a concern because it is just a discolorization of the palate but it is not in any way related to a serious concern. Yes I think, common among who are taking Gleevec for long might have this experience, but since the expert says it is nothing to be bothered off and now that I read through this CML support, I thank God for its his way of telling me be at peace and not to worry.