Hello all.
I am wondering if there is anyone else here who has naso-pharyngeal cancer. The type Matthew has is so rare the Doctors have hardly come across it. Hopefully we can support each other. Michelle. x

Hello,my husband has just been diagnosed with the same rare cancer.We feel very confused as his initial symptoms were usual sinus /polyp problems with an added painful headache.After some months of anti biotics we requested to see an ENT specialist.On removal of polyps he found this rasperry shaped growth of Sqaumus type.It is lying near the base of the brain and near the bone.The oncologist said he was going to start off with 3 sets of Chemo with a breakof 2 weeks in between followed by radiotherapy and another 2 /3 sets of chemo.WE both felt when we went to see this man the room was full of too many people and on asking questions was just ignored.We are also concerned about the the length of time beween the Bi-opsy and the start of treatment which is now nearly a month.The tumor is 2" and is causing my husband terrible neuralic pain down the left hand side of his face and head.He also is starting clicking in his ear.The pain killers and anti imflammatories he has been given are making him feel very sick and ill.They have been changed ,but to no avail.He has a low tolerance to these tablets and i am concerned how he will cope once treatment starts.i also asked about getting the treatment done privately as he has a private health scheme but was told no really with a shrug.My husband is feeling very depressed at the moment and i myself just cannot take it in.Is your treatmebt the same as ours ?

Thanks for listening.Bell

Hello Bell

Sorry to hear about your husband's cancer. You will find a link to a relevant patient story on the MCF website

quote:

pain down the left hand side of his face and head.He also is starting clicking in his ear.

The pain in the side of the face may not be anything to do with the cancer. Often the pains in the area of the ear (click) and side of face are TMD Myofascial pains which are misdiagnosed. See: Oncologic stress: Its causality in myofascial pain disorder or in temporomandibular disorder. My advice on this can be found here.

Hope that helps. Let me know how he gets on.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Dear Dr Vinod,thank you for your reply.The oncolgist said the head pain was related to the cancer and is hopeful this will reduce after Chemo sessions.Paul starts his treatment tomorrow and all dates are now set for the Radiotherapy ,Moulds and Simulator.Is it possible too contact Michelle 44 as i would be interested to hear how her husband is progressing as he has same diagnosis as my own husband and she seemed to keen to hear from anyone else who had this rare cancer.Thank you Bell.

Hiya Bell. I have sent you a private message.

Whilst I'm here I thought I'd give an update on how Matt's doing. Well we had a lovely holiday in Torquay and our daughter's wedding was brilliant. Matt was really well for the wedding and really enjoyed it. The holiday was good too although he was quite ill a couple of days and I thought I'd have to take him into hospital, but we had reasurrance from the Macmillan nurse and he got through it.
He has started having problems swallowing now and has started choking on liquids which have also started coming down his nose. The swallowing nurse came to see him with advice on his diet and how to eat and drink which has helped a little.
Some days are better than others, he can be really well one day and the next I think the time has come, he is so so ill, but then we up his meds and he comes through, it's hard watching him sffer though and the bad days are becoming more frequent now.
Anyway, we go on and try to make the best of things, there's no other option really is there?
All my thoughts and best wishes to you all. Will try and put a photo or two on here of the wedding if I can get my teenager out of his pit. ha ha.
Take care love Michelle.

Thanks for the update, Michelle. I look forward to the pics. Let me know if there is anything i could do. Take care.

Best wishes
Vinod

Michelle's photos!

Lovely photos, I think we need more of these of happy occassions to cheer us all up!
Sue

Hello
My good friend has just be diagnosed with Naso Pharyngeal cancer in the post nasal! I know that there are also some tumours in the neck and on the lungs, he was told it was a small cell cancer! Can anyone help me with some information please.

I also am going through chemo at the Queens Medical Centre, with my 11 year old grandson who has a non hodgkins lymphoma so I'm not going to have much time to spend looking up the information for my dear friend.

I thank you for any information that you can give to me,

Hello jacq, my husband was diagnosed recently with NPC.Athough it seems to be a rare cancer i have me another lady on this site called Maureen44 who has been really helpful to me .My husbands NPC is attached at the back of the bone at the base of the skull.He has a few lymph nodes on his neck which they are treating also.Paul has started treatment with 2 sessions of Chemo in which he stays in hospital for 4 days and receives an intravenus drip of 5FU plus Cisplatin.The Cisplatin runs for 24 hours only and the 5Fu for the 4 days.There is a 3 week break and then another cycle.All in all he is to receive 5 cycles.During the first 2 cycles he was fitted for a mask in the mould room and had ct and simulator scans done in preparation for the Radiotherapy which will run daily minus week-ends for 7 weeks.
Paul has just completed his second week of radiotherapy and is experiencing some side effects .We have just really started with treatment so we are finding out as we go along.The Treatment we have been told is tough but hopefully if it achieves good results we are hoping for a curative conclusion.If there is anything else i can tell you please ask .We are trucking on here just getting through the treatment and hoping for a cure.I have found this forum excellent with everyone sharing tips for irradiated mouth problems and am now using them for Paul.I have found the biotine products excellent.
Wishing you good results for your Grandson he is so young. Love Bell

Hello Jacq

Sorry to hear about your friend and grandson. Hope they get well and their treatment is successful. Have a read through the posts related to NPC. You will them informative.

Best wishes
Vinod

Dear Bell & Dr Joshi,

Thank you so much for your reply and I will look at the site in a few moments.

The delay in getting back on the site is due to my grandson being back in the queens med for his chemo and my friend having lots of visits to the DRI - both hospitals seem to have different approaches to the treatment of cancer and I'm sorry to say that the DRI seems to be a little slower that the Queens.

Bell, I do hope all will be well for your husband.