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

Hey Ron how are you feeling brother. Regards Ian.

Hi Nikki did you get my post. 

Hey Ron 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 

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