HI Ron this is GREAT NEWS!!!! I am the wife of someone going through this now and I would so appreciate ANY advice you could give us. I would love to know how to best support him. We have just completed two round of chemo and about to embark on the combo chemo and radiation for six weeks with five days on and two days off. It's all super scary however we have to remain positive and would love to hear from you! Also he is 44 and is stage two if this is of any relevance to your much appreciated advice. Carole. X

Hello Carol. Im sorry that you have had to contact me. I was 38 when I was diagnosed and had 38 radiotherapies in total and 4 METHETREXATE chemos. This was in 1995 and as I keep in contact with the people who saved my life I know that the way trearment is delivered is different but the timescale and chemo/radiot mix sounds similar. Does he have any spread to other areas? How did he discoover it? Is he or I hope was he a smoker? I was a smoker and maintain it caused the cancer following on from an operation to clear my ears which drain into where? Yes the postnasal space. I found a lump in my neck and told doc at hospital who was reviewing my op in Dec 94 and March 95 that I had a swelling in my neck and it was getting bigger. I was told it was virus then second time it must be an infection

My tumour when diagnosed was at T3/4 and M3/4 as I had 4 tumours in my lymph glands in my neck in a virtually mirror image positions as well as the primary.  Every treatment reacts to different people in different ways. The chemo was great I went from 10stone 12lbs to 13stone 6lbs. During radiot I lost weight.If you tell me what side effects your husband is having I could confirm I had them. Most likely he will have a mouth ulcer of two, lose hair at back of head, dry mouth, buy a bottle and top it up. I called it my Chateau De Tap. he may lose his senses of smell and taste temporarily. He may get slight burning on his neck.

How many hits of radiot a day does he get? I got 1 hit a day on nose, on either side of neck, on chin and a whole face one. What chemo is he getting?? Chemos differ for tumour type.

Tell your hubby that POSITIVE MENTAL ATTITUDE is worth 10 chemos and radios. Talk to the tumours. I told mine "I die you die at EXACTLY the same time ands me so you dont win." Lets live together. I started chemo on 26th June and radio on 18th July and finished on 22nd Sept. I was given all clear on 4th Dec as original neck tumour would not go away but it did. Regarding support people I worked thru my chemo and radio as cancer was NOT going to run my life. Have u got a food mixer?? You may need it to liquidise hubbys food.

Just be there for him

Hear soon

Ron

THANK YOU so much for answering! This has been so helpful. You are right there is NO ONE else with this specific cancer!! I have heard it is much more common in China for whatever reason. 

We will be starting the chemoradio on Sunday . So Sunday he will have the cisplatin (the one that makes him super ill and bad pins and needles!) then the five days of radio daily. He will get in face and neck too and this will be daily for five days for six weeks. He has an extra lymph node that grew since the beginning but they said this is common. The main thing is that it has not spread to any other body part below the neck. I understand that the radio is accumulative , was this the case for you? I am hoping there will only be a short time where the pain is very intense? To be honest I waver between being SUPER POSITIVE and focused to being TERRIFIED for him. I am banking on the fact that like you he is young and strong and determined to live (especially for our five year old daughter). He WAS a smoker and a highly stressed individual which I am sure also didn't help!! 

Much the same as you we discovered a lump and went to get it checked out. The hospital were amazing and we had a pet scan the next day and was confirmed as cancer in the Monday and we started treatment on the Wednesday. They did say that they had caught it early and that they were treating to CURE did they tell you tips also?  I keep repeating this to myself. CURE CURE CURE! I am trying to look at this as a life warning as to how he was living his life. Do you feel now that you are a new improved person and value every single day on this beautiful earth? I feel like everything is a lesson in this life and my husband and yourself and so many others are being tested. 

Did you have a good support network around you also? I am SO HAPPY to hear that it went so well for you. I am visualising every day that the radio is like space invaders killing this cancer!!! Has there been any permanent effects? Much love . Xx

Hello Caroleti

I only ever had methetrexate and it was wonderful, never sick etc etc and kept hair EXCEPT at back of head where radio rays blasted it. VERY common in China and Asian population seemimngly due to the way they smoked.

Did ur hubby, whats his name? inhale smoke thru his nose or exhale thru it??? Ayear after if I was hospitalised with facial swelling nothing to do with Little C and saw a consultant who had NEVER seen someone white with it!!!

Radio is NOT pleasant and I ended up on oramorph and Morphine sulphate tabs due to pain probs. Mouth is not for kissing ok??? LOL. But EVERYONE is different. I have lost my sense of taste, smell and saliva glands BUT I AM ALIVE!!! My son was 5 too  when I found out so I had him to live for and my 9yo daughter.  My pituitary gland is knackered and so is thyroid. This only appeared 17 years after treatment!!!

I am telling u how I was and Im sure Mr will be different as treatment has moved on now I know. I had perspex mash now it looks like a string vest!!!

This may sound sad but I was told by nurses to talk to the tumour first tyime I was at oncology. I said this may sound daft but I already do and told iy I die u die exactly same time so lets live together. No probs with your PMA they said!!!

If u need a shoulder or to spout off Im here ok?? Where do u live?? Where is treatment?? I was treated at The Beatson in Glasgow

Hugs and cuddles

Ron xxxxx

I had 38 radios and 4 chemos. Did ur hubby get a strange smell on his nose when gettin radio? Has his neck gone blue?

Dear Ron 

You have no idea how I look forward to reading your emails! You are the best coach ever!!

My husband is called ed and he is dealing with it all so well so far  is braved for the up and coming radiotherapy. We have pretty much been told all the symptoms you have had but so much better to hear from someone who actually went through it and felt it. The pain is obviously a concern but have told Ed he just needs to take ALL the pain relief (much like my birthing plan which was basically GIVE ME ALL THE DRUGS YOU HAVE ha ha) did it take you a long time to recover? We have seen people in the hospital after the treatment was done and they were NOT in a good way! Obviously not same cancer but radio none the less!! What about work? Did you end up going back fairly quickly? God! So many questions! I feel like this is all so surreal like a bad dream but I am also aware that this treatment is so short and sharp compared to others who have to endure treatment for so long. 

I do agree with you that losing sense of smell or taste if nothing compared to keeping your life! We agreed that whatever happens we are grateful for just being alive! Did you feel that the whole experience changed you as a person? I am hoping that all of this will eventually improve our life ie we will be better as a couple and as parents and not so focused on the things that just don't matter relatively speaking! 

Ed is being treated in mount vermon in Northwood in London. Amazing place with amazing staff. Yet another thing we are so grateful for! Trough the negatives we have to always try and focus on the positives (although sometimes it's not easy!) .  Are we allowed to exchange emails and numbers on here? You honestly have no idea how relieved I am to find someone to talk to and I don't want to take up too much of your time but I would be forever thankful to be able to talk about this from time to time. I also totally understand if you would prefer to not talk about and have someone constantly badgering you with questions! I am sure there are v dark times to come and feeling alone and isolated is just the worst feeling in the world! 

Lots of love. Carole Xxxxxx

Hey babe sorry I wasn't clear we haven't started yet we only start on Sunday so all this to look forward too!!

Hi Carole, 

We're so glad to see you have found someone to connect with on our forum :)

I noticed that you were asking if you can exchange emails and numbers. You cannot exchange personal details when posting on the forum as it breaks our terms and conditions however you can send private messages to each other. To find out more about how private messaging please click here.

Kind Regards, 

Steph, Cancer Chat Moderator

Thank you i have done this now! 

You're welcome :)

Hello Ron how are you. I read your experience on the board and I thank you for sharing and helping everyone. Would it be possible to ask a few questions of you if you feel up to it. Regards Ian.

Hi Ian

Just seen your post. I was diagnosed with nasopharyngeal cancer last week.

Sounds like you're recently diagnosed too? We may have the same questions to ask ...

Regards

Nikki

Hi Ian

Just seen your post. I was diagnosed with nasopharyngeal cancer last week.

Sounds like you're recently diagnosed too? We may have the same questions to ask ...

Regards

Nikki

Hi Nikki how are you. It's certainly hard to get answers to a lot of questions I have but thanks so much for sharing. I was diagnosed 4 years ago with unknown primary cancer. I had my tonsils out and had radiotherapy and chemotherapy as well. The just recently I was told I had NPC. I have been trying to get answers for the past few months. I have had PET scan, MRI and CT scans. Still trying to get the right diagnosis. I hope I can get some answers soon. I had a biopsy surgery done and it was inconclusive. I am still trying to get an answer. Regards Ian. Would be great to chat Nikki.

Hi Nikki did you get my post. 

Hi Ian

I am so sorry to hear you are still trying to get the correct diagnosis. Have you had further symptoms recently as it's 4 years since the unknown primary cancer diagnosis?

We have had similar investigations - MRI, PET-CT and neck lymph node biopsy. Most results in apart from whether or not it's EBV related. 

Where do you live? I am in Hampshire

Reagrds, Nikki

I'm in Asia at the moment. No I have been healthy for the past 4 years. Only this year with flu and nasal congestion. Very heavy mucus. Many tests and surgical biopsy. I will have another surgical biopsy next week as I have an ulcer in the soft palet of my mouth. Now the Dr is thinking it could be lymphoma. Thanks for sharing Nikki.

Hi Nikki, may I ask how you were diagnosed and what symptoms you had. It's not a common disease in the u.k. Regards Ian.

Thanks to evey one this post has really helped and hope everyone is doing as well as they can and have found answers.

I  got diagnosed 22nd July with Npc caused by epv , I'm 36 and had glandular fever when I was about 13 , had symptoms for 18 months referred to ent for my ears but due to covid never got seen , the started with constant headache and facial pain dr said stress after 7 months i  went back and with a swelling in my neck I was dismissed but mri was requested to put mind at ease for the headaches.. had to wait 8 weeks in-between that time went back due to the swelling and then an urgent referral was made to ent for my neck to reassure me , any way that led to a ultra sound and then biopsy,  biopsy and mri came back at the same time confirming diagnoses,  I'm currently in hospital on my 2nd cycle of chemo to have one more then to start radiotherapy  trrtment should be completed for Xmas time all being well.

Emz

Hey there 

I was diagnosed with Npc the end of June this year due to start chemo on 21st July and to be truthly honest I am bricking it, just wandered how things are going for you 

Haven't been told much really only that I'm stage 4 nothing eles. Mine started with loss of hearing in right ear and headach/fullness on right side I've ha no lumps in neck that I've felt 

Be great to hear back and I hope all is going well

Hi villa1 ,

I didn't even ask my staging  at the time I didn't want to know I was just like let's do what we have to do after reading paper work tho I belive it was a stage 3 but had spread the lymph nodes (4) in my neck hence the lump. 

Chemo is different from person to person I was sick quiet a lot all through out chemo and radiotherapy. 

Trail and error with antisickness to find the right one. 

I finished my chemo in November i finished  radiotherapy in Dec I had my scan in March and it had showed that it had responded well to treatment and there was no signs in my head or neck  yea fingers crossed , however I have I just finished 4 weeks radiotherapy to my hip now. radiotherapy wasn't too easy but manageable with again different side effects for different people. 

I'm just waiting for my next scan to see where things are up too. 

My hearing did improve after my 1st chemo which was great but now it's variable and suffer from ringing tinnitus Too.

Will you be having  chemo and radiotherapy? 

I think this time will be the worse for you with the not knowing how you will react your head goes on over drive , try not to read up online too much about it different people have different story's some people get through tretement no issues I hope it's easy for you.

Male sure u relay on people for support I tried ti keep a lot of it it which didn't help me then when I opened up to friends and family it helped me much lore than I thought , utilise your nurse for any queries or problems,  I just send mine a quick text n she sorts things out for me. 

Tell your doctor any worries and any side effects if there is any as soon as they start so u can be on the ball with it.

I wish you all the best and strength throughout this xx

Hi Emzlt

Started my chemo today cisplatin and gemcitibine i have to have 3 rounds of this but not sure yet on radiation javemt been told 

Chemo should be finished in beginning of September fingers crossed