Hello Wafita,

How u getting along???

Hi Ron

hope you are well and life treating you good. I managed to have my meeting with the doctors last friday and they told me am on stage 3! the tumor is at the back of my nose and spread to my lymph node on my neck

my treatment will be 2 sessions of chemotherapy each one lasting 5 days straight as an inpatient in hospital then leave to go home for 17 days then back again for another 5 days session then 6 weeks of everyday radiotherapy with an additional 1 day chemotherapy at the beginning of radiotherapy and one at the end of the treatment !!

on a positive note, I will start my treatment this wednsday so the sooner the better! I am anxious of how much side effects I will get bt I will take each day as it comes!

Thank you for all the informations and support u have given me much appreciated.

take care and hopefully speak soon

Hello Wafita,

Great to hear from you and good to hear all that positive stuff.

Dont worry about staging its only a term they use to the spread. My tumours - all 4 in my neck and the primary in the nasop - were at stage 3/4 and T 3/4 which is tumour definition, so u got great result there.Tell me what symptoms did u have???? With me it was this lump growing in my neck nothing wrong with nose.

PLEASE Keep in touch cos its not an easy battle and u might need a caring and knowing ear to listen cos u will feel crap. Have docs told u about any side effects???

Hear soon my good friend and I have been praying for you

Get Well Soon

Ron

Hello SimChip,

Sorry to hear u have cancer but good to hear its HL. Its a pretty easily treated cancer so dont despair. You will find out about it online.

They tend to blame Espstein Barr Virus for lots of cancers partic HL but no one knows what really is the cause apart from cell mutation. Do you smoke???

Hear from you soon

Ron

hello Ron

how r u? hope u well. jt had my first chemotherapy session for 5 days! came out of hospital wednsday! first 3 days were great! hardly felt any difference bt on fourth day it wasn't so good as am walking up to the bathroom I passed out and bang on floor! it turned out I had a low pottassium level and also my heart beats slowed for a bit! they stopped my chemotherapy for a bit untill they done some checks and a blood test then put me back on it again a while later !

rest of day and next day I felt sooo weak! didnt get any sickness thank god bt I was on anti sickness medication since day 1 and apparently that helped !

now am home, still feeling very tired and weak and have a very sore throat since yesterday! looks like its turning to an ulcer too! hardly ate today cus of how sore my mouth is and it hurts

been told to use warm water and salt as a mouthwash bt dont think its making any diffrence! will call hospital tom to see if i can get anything to ease the pain!! although they told me not to call unless i have bleeding gums ?!!

anyways this is what happened so far! and I hope I dont get any more side effects for now! am due back for my second chemotherapy on 4th of february! i think its too soon bt thats what the doctor said!!

until next time! u take care of urself and hope to hear from u soon

Hello Wafita,

Great to hear from u. Good to know ur getting chemo and not being sick. I was never sick once and I only had 4 single injections of chemo so thats fantastic. The anti sickness steroids I was given were DOMPERIDONE and I called them my Dom Perignon champagne tablets as was never sick. Just make sure u take yiur time when standing up as u have had a wee lapse there.

With regards to your mouth ulcers that was the worst side effect I had 1 ulcer - my whole mouth!!! I only got the ulcers after I started my radiotherapy but they will have changed treatment cycles etc as its 17 yrs since my fight with Big C. I had METHOTREXATE for my chemo, what u getting and how often?

Re not eating what weight are u now??? A tip for u if u dont feel like eating solid food get a liquidiser and liquidise ur food but make sure u do it in the relevant food type ie if ur having chicken, potatoes and veg always do the food components separately so u still know what u r eating. I was told that by my Oncologist.

Re ur salt water mouthwash it will be doing good as salt can protect against infection. I got a mouthwash but in the end it didnt make a difference. I got my chemo 2 weeks apart so sounds the same.

Have u been to get fitted for ur mould on ur face and neck yet in preparation for your radiotherapy?? This keeps u in same place at all treatments and is easily fitted nowadays compared to my time as I still visit the hospital I was treated just to see the staff. Make sure u drink PLENTY water and make sure ur tea and coffee is not hot as this can damage ur mouth. Also steer clear of ice cream and ice lollies too!!! Cold can do as much damage as hot fluids. Carry a water bottle about as ur mouth might get dry.

Have u checked size of lumps in ur neck yet?? Dont worry if they have not fgone down that will happen soon enough. They may feel bigger but thats to be expected as they can grow.

Keep up your fight Wafita, its not pleasant at times but whats the options?? Being dead???

Keep me updated my friend and I will say another prayer tonight.

Regards

Ron

How are u doing Wafita???

Ron

Hi Ron,

I have been reading your thread on Nasopharangeal cancer - my 22 niece has been diagnosed and we are in in shock - especially around the treatment she is going to have and what it will do to her - it sounds horrendous...

Its good to know there are survivors out there - would be great to hear you still doing well :)

Hello Baz how are you?

Really sorry to hear about your neice. Where does she live? When did she find out and how did she notice the tumour? 

Everyone reacts differently to treatment and treatment has moved on in the 20 years since I had Big C.The reason I know is I keep in touch with staff at The Beatson in Glasgow where I was treated. It is a RARE but VERY TREATABLE  cancer. Only 0.001% get it.  I was glad I was told as I already knew as I felt this lump growing in my neck and it wasnt a swollen gland caused by a virus or infection as one junior consultant told me. He was NEVER allowed in to my consultations again EVER as I told him in Dec 94 and March 95 I had a growing lump. Where does your neice live? Has she had a scan yet to check for any other tumours? Where is the tumour or tumours?

Hear soon

Ron The Survivor