I'm new here, but I was diagnosed with nasopharynx cancer(behind the nose) in Jan 2007. I've had three major types of theraphy treatments.

Radiation theraphy
Chemotheraphy
Bone Marrow Transplant(BMT).

I had my BMT in July and well since august I've been cancer free. I'm still scarred from the ordeal and well I wanted to maybe answer questions for anyone, but specially those going threw radiation of the head and neck area.

I should have done this a long time ago.

Right now I'm partially eating, partially ensuring and boosting myself. I can barely open my mouth. I have a hole(cavity) left side upper mouth, that goes all the way to the sinus, or the nasopharynx(behind the nose area). I use an Obturator to close it. Its not painful and with the obturator its pretty simple to get ensure or food down on occasions. My mouth is still partially dry, alot better though.

Since most of the radiation was to my head region, the most of the problems were with the mouth. Swallowing is a bummer. Oh the chemo took my hair, though its growing back now. Its sorta weird though, kinda like baby growth. My niece who's 3 months old has the exact same kind of hair.

Umm lots more to tell, but I dont want bore ya.

Welcome Rohit! Glad you could join us. I'm sorry to hear about your ordeal. It's nice hearing from you! Congrat's on being declared cancer free.

Any help you can offer those of us here on this board is more than welcome. You will probably realize also that you'll learn quite a bit from others.

I've learned so much about all types of oral cancers that I never knew existed.

Be prepared to meet a huge group of fabulous people on this site!

Best Wishes, Cricket

Hi Rohit, welcome. I had the RT but no chemo and I had a hole and obturator to start with. The obturator lasted about 2 weeks and I binned it, couldn't handle using it and thought it was a pain in the......
I had reconstruction surgery after about a year because I couldn't talk properly (the wife loved it ) and people were treating me like I was mental. I think it was the 'if he cant talk he cant have a brain' attitude. Reconstruction was really successful and I'm glad I had it. Hagg.

Thanks everyone.

Glad to be here. Hey Hagg.

What kind of reconstructive surgery did you have? Was it just filling the hole? See I cant speak properly, but that is more associated with the lack of movement of the soft pallate. Actually, no movement, so air passes out my nose. No pressure. I pretty much hate talking, and try not to talk at all if I can help it. There was a time I used to talk plenty.

Any help will be appreciated.

Thanks

Hi Rohit, I had most of my soft pallate and my upper jaw removed in '97. I gave up talking pretty much like you.
I dont know the technical terms of what I had done but basically they cut a groove in my cheekbone and used soft tissue from the side of my head to cover the hole where my soft pallate used to be. It's pulled down through the groove and still attached at the head end so it heals to my mouth and goes tight like the original soft pallate. It's nearly impossible to feel where the join is and works really well. As soon as I woke up from the op I could talk fine.
Hope you get what I mean. Not brilliant at explaining medical stuff. I dont even know the details of what I had apart from it was SCC and it pissed me off so I kicked it's ass . Hope this helps but if you want any more info get back to me. Hagg.

Hi Rohit ,welcome to the forum ,my husband was diagnised with Nasopharyngeal cancer and had Cisplatin plus 5 Fu in cycles during his 35 Rt sessions .Paul did not have mouth problems just headaches and painful sinus infections it was the terrible pain down the side of his head that alerted us to serious problem .

Would be interested to hear about your own symptoms beofore diagnosis and also your treatment especially the BMT therapy .Paul's cancer was also behind the nose but must have been in a different place as he did not need any facial or mouth surgery .Unfortunatley Paul had a recurrence recently underneath the original site and has had more treatment .

My concern over the last week is he is experiencing some facial pain in centre left cheek especially if he moves it in certain positions, which could be some neurological kick off from recent RT.The main problem this time has been hgis ear .He feels it is inside of cheek up on left side of gum but we cannot see any ulcers or cuts .We have dentist next Monday, so he will have a good inspection and have Clinic appointment on the Wednesday so will have a chat about this problem with the doctors then .

I would be very interested to hear about your experience as this type of cancer appears to be rare .

Best wishes to you and welcome to the forum .

Bell and Paul .

Hey Hagg.

I had basically given up on the hope of being able to talk properly ever again so more info would be a blessing. I guess its quite early in my cancer free days, maybe thats why doctors havent mentioned anything like this to me.

Its so hard not to be able to communicate...I havent called any of my friends in the last 3 months, plus the fact that I moved away, I'm basically mute, though I talk to my parents the little I can.

I'm happy that atleast I can hope to the idea of normal speech, and I'll not get too excited as I have a very long way to go.

Thanks

Hi Rohit, fair play to you for getting on with life. Just to galvanaise others postings on your dilemma, sure you can get great support, I have found on this site, anyway.

Not that it helps you but I have just eaten a half grapefruit. I had the first half this morning. Mind you I think I put salt instead of sugar this time, until it sank in that it was sugar.

I guess life can never reach how it was before, I hope you remain strong, kind regards Nigel

Hey Bell how are you?

I'm sorry to hear about your husbands condition. I had nasopharynx lymphoma. My doctor told me that every year from the 900 lymphoma cases they get, only 3 to 4 are my kind.....so pretty rare.

I suffered from sinus infections for nearly 2 yrs prior to my diagnosis of cancer. I went to a number of ENT specialists. I dont think there is an antibiotic course which I have not tried to get rid of this problem.

Initially the problem was pain in the face, head and just stuffy nose, swollen. Slight fevers. After a course of antibiotics and steroids(nasal spray) I used to get initial relief. It would go away for a while only to return again. I would end up taking more antibiotics. In august 2006 I wrote to my parents (who were in Botswana, next to South Africa at that time), my sister(birmingham Alabama) about my miserable life and how I could not take it anymore. The sinus infections were killing me. I had pain and started having fevers. Chill, high fevers 2 to 3 times a day. I was a student in dallas, texas living with roomates. I went to doctors and suffered alone. After that email, my sister flew down to dallas and took me to come live with her in birmingham, AL. I dropped my classes and there were numerous nights spent by my sister and bro-in-law trying to get my temperature down. The ent suggest I get sinus surgery to open up my sinuses. I also had a bent bone so they wanted to straighten that as well. I couldnt afford the 20,000+ treatment with the student insurance I had, so I went to Botswana. I finally got my surgery done in South Africa. I returned back to the states in Jan 07 and had relief. I spent a good 3 months with relief, the next 3 with partial problems, and then the problem cropped back up. This time I spent a longer time suffering alone. I ended up getting a good job and health insurance in august and started working. I was happy doing at work so sinus issue was something I started living with. Numerous antibiotic courses, fevers 4 times a day. I used to take fever medicine before going to work. Having good insurance allowed me access to better doctors. I was referred to a ENT who tried various methods to try to solve this new sinus problem. I tried inhaler antibiotics. The problem was, I only got relief for a while. As soon as I was off the medication, it would crop back up.

Sometime in december, because of fever I didnt get up from my bed for 3 days. My roomates took me to the hospital, i ended up staying for only 2 days. More doctors appointments later I was diagnosed with the cancer.

feww.....any now for you answers.

If your husband had RT to the face then I'm guessing thats the likely reason for the pain. I did not have any surgery either because its just not possible to do any according to the doctors here. I have pain, which was quite a lot, on the left cheek, Its the bone area, close to my nose. Now, I forgot to mention that sometime in December I lost full movement of my left side of face. Hospital said, Bells' Palsy. after diagnoses of cancer, they believe that the Lymphoma was pushing against some nerve. In all likely hood the pain your husband is experiencing is due to the radiation he got, and I'm assuming it was to the face. Radiation kills plenty and thats the reason I'm still taking pain killers. Its easier to sleep at night.

Now the initial radiation theraphy had come back with good results with no cancer left. They checked for it doing MRI CAT and biopsy. I was weak, scarred from radiation. Doctors suggest I also get chemotheraphy done. After the first few sessions I started having fevers again. My doctor admitted me to the hospital. My ENT did another biopsy and found that there was cancer. Recurrence, or missed during RT I'm not sure. They suggested it was new growth. My doctors, oncologist, ent and the lot, suggest I have a new chemotheraphy. Something different. Last time it was CHOP + one injection to the spinal cord. Now that spinal injection was painful, so much so that if I sat up or stood up my head would hurt like hell.

Now since my case was rare, instead of going through another chemo session or RT, I wanted my oncologist to get a second opinion. See, they were basing their judgment on cases they had seen or on online journals they had read. My oncologist was more than happy to get in touch with 4 to 5 lymphoma doctors. They all thought the best way to go is BMT. So instead of more radiation, or more CHOP, I had bone marrow transplant.

Now I wouldnt ask you to go with BMT as its known as the last resort. Its basically the most lethal chemotheraphy giving in two chunks that kills every known dividing cell in your body, I think. Its also the toughest solution to cancer also. Its tough in that it kills all your white cells. When they reintroduce new healthy white cells back into your body, your sort of born again. Over here they actually have prayer the day the new white cells are introduced. After BMT, your looking at about 6 months of feeling as if this is the first time for many things. It leaves you weak, very weak.

I still have pain inside my mouth, so much so that i cant even open it all the way. I take small amounts of food, though ensure, or milk shakes are easier.

Dont know if i answered all your questions but next time I'll try to be more brief and too the point.

i hope everything goes well, best wishes to you and paul.

Hi Rohit ,my goodness you have had a time of it indeed .There are a lot of similar instances .My husband is now 59 but from when he was in his early 20's suffered dreadfully from sinus problems .He had a turbinate operation when he was 22 to try and resolve this, it worked for a little while then things started back again with polyps which he had removed every 3/4 years to help .Also was on constant steroid sprays and every antibiotic in the book .Was not until he was around 54 the pain in his head was so bad and ENT operated hoping it was a large polyp which was causing the problem as there was a shadow there on the CT scan .What he found was a large raspberry shaped tumour behind a small polyp in Nasopharynx, which was putting pressure on optic nerve .So Paul had the Hoe treatment of 35 Rrt plus cisplatin and5 FU cycles very 3 weeks.

Like yourself recovery was hard and Paul was very ill for nearly a year as he was radiosensitive and took nutrapoania sepsis in the 3rd week of treatment .He was also on peg feeding for a around 8 mounths as his mouth was just inoperable.Paul's speech took a while to come back properly due to the severe ulceration of the whole inside of mouth and throat plus RT stiffness. However we are now 3 years down the road and although has no saliva and prone to some neck swelling we were doing well.As long as Paul uses his Glandosane saliva spray and has his water his speech is absolutley fine not quite the way it was but perfectly ok .(have a feeling I am repeating myself herefrom previous post )

His breathing was bad due to scar tissue from RT and had an operation to repair twisted septum and open up nasal pasages this was done last January,they also biopsied at this time and found more cells underneath so he then had more RT for 30 weeks with IMRT.Treatmnet finished end of June and things are geting a lot better ,compared to first time totally bearable, but he is still having a few of post RT problems.

It does take time for healing and your mouth espcailly ,but I am sure you will get an improvement in time .

You will find lots of help here as I understand your main concern is your speech.This is a difficult one as it is our main channel of communication but it is early days for you Rohit and you are still healing,Paul's speech did come back and he had sessions with the speech therapist at the hospital to help loosen off stiff muscles and overcome certain pronouncaitaions etc all which boosted his confidence and given time it did work. Paul also did not want to talk to anyone but as things improved this changed and it will for you also .

Please keep us updated as this forum will help you cope and make you stronger to deal with the outside world again.It is so easy to close the door on everyone and become a recluse we did this for a while too.

Best wishes to you ,Bell and Paul

Hi Rohit,
Am sorry for sending you a PM but I prefer keeping my comments to the minimum as (no offence to anyone) a lot of people on the forum dont know a thing about one goes through the pain etc. They all keep moaning about husbands etc - who have died years ago and some are down right rude by acting high and mighty and more then often Dr. Joshi has stepped in and stopped things from escalating. I dont mind making jokes about myself or my cancer - but if one thinks they can abuse my Country and my people - they deserve every bit of shit - I dish out.

Now that - thats clear - do me a favor and on the main page among the stories read" Ananth's Story". I will await your reply on pm or on the forum - which ever way you feel.
Take care my friend - you have been through a lot though I cannot say I have been through less.
With lots of warm regards,
Ananth Shenoy
PS : You should start counseling to patients on various things as I do. I receive one huge number of mails everday and I make it a point to reply to each one. You are most welcome to write to me on my id: ananthshenoy@email.com or chat on ananth1958@hotmail.com,
Looking forward to hearing from you. Sorry about my spellings as I am typing practically in the dark as everyone else is asleep.
once again - take care,
Ananth
PPS : Dr. Joshi and I are great friends and know each other when he visited India.