Hi Rahul,   Sorry to hear about your Dad, it really is the pits, both the diagnonis and the treatment.  But we are all here as evidence that your dad can get through and come out on the other side.   The use of a neubuliser was extremely helpful especially once the mucositis sets in and even the gradual onset of it.  I was using it before rad treatments just to get me through the session without gagging on the mucos while I was having treatment.  The musositis started for me around the end of week 3, and it gradually gets worse.  The rad department would administer any b4 treatment but as I said by around the end of week 3 I needed a neubiliser at home to use more regularly.  The oncology department gave me one to lend, so don't buy one wait until things happen then your oncology department can help you out.  You won't need it forever so no need to buy one, I used it for around 6-8 weeks then as the mucositis started to settle I didn't need it. All the best for your Dad, he will be needing all the support he can get. April  ... View more

Excellent Cath....the only good thing about mri is when they come back all clear! ... View more

Hi Maurie,   Welcome to post treatment.  I know it's not nice....it really is the pits but every day will be a tiny bit better than the last.  Just focus on your nutrition and getting through each day, focus on what you can do to heal.  For the mucus have you tried a neubulisor?  I found that really helped me....I was doing saline neubulisor up to 4 - 5 times a day and even through the night, it really helped to break the mucus down so it can clear....until it starts all over!  Steam is good too.  I got a humidifier for the bedroom at night to keep the air moist.  It all eases things but it doesn't really go away any time soon, it does linger on and gets slowly better.  The aftermath of radiation can be really devastating....no taste no smell affects to hearing....But it is all a small price....see the bigger picture.  Things do get better but it is a very very slow process.  Don't try to get off your pain meds too quick, I was really anxious to "detox" after treatment kniavely thinking it would be a quick healing process.  It takes time and I was on pain meds for a good 6 weeks post treatment, I slowly came off them.  At the moment you just need rest and time to recover, keep up the nutrition - I know that can be really hard as you are probably over it all.  But just keep going...it will all pass and sink into the distance very soon. ... View more

 HI Cath....The staff there are just wonderful...My oncologist is Richard Khor, I really couldn't have asked for better care and support through some of the darkest days of my life.  Wonderful people.   I finished just before you in Feb 2017!  So we are both sitting at that all important 2 year milestone.  How are your follow ups?  Regular PET and MRI? ... View more

Thoughts are with you this week Maurie as you go into the home stretch!  One day over, one day more you don't need to put that mask on and get radiated!    I thought perhaps you were in Melbourne as a lot of what you were saying about the approaches from the ocology staff for managing the side effects are very similar to what I experienced at the ONJ Cancer Centre at the Austin here in Melbourne.  There are some very special people working in oncology...   Soon you will be looking back on this Maurie and like us, you will pop back in here to share your recovery and "new normal" experiences.    Hang in there my friend, it's almost done! ... View more

Hi Maurie,   Really feeling for you here!  You are in the thick of it right now, things will ramp up in the last days and all you can do is ride with each punch as it comes.  That is the bad news....the good news is you are on the home stretch!  You are almost there....then there is healing.    Really protein is the golden source of rebuilding the rad damage, externally but more importantly internally.  As soon as you finish treatment your body starts to rebuild and each day will be better than the other.  However, it does take time things don't happen over night.  You really need to focus on your protein intake I can't stress that enough....water and protein.  If you don't mind me asking where are you being treated?  You will hopefully receive the excellent after care that I received from oncology nurses and the Oncologist towards healing.     Right now focus on resting as much as you can....follow what they have told you about protein intake through the NG tube....don't give up the fight!  Remember nutrition is something in your power right now....make sure you are getting it in.  Set your body up to be able to fight, right now it is taking a beating but the body has an amazing way of fighting and I think all of us that have experienced what you are going through now have witnessed first hand the amazing healing power of the body.    I felt exactly the same as you with wanting to tell the rad department where to stick the treatment.  I told my oncologist in the last two weeks of treatment I couldn't go on....I couldn't do it.  I told him I wanted to stop treatment and whatever happens happens.  He heard me out and of course gave me stats .... then he said to me you have four kids and a husband you have every reason to live.  I was at breaking point but it helped me refocus away from myself and what I was facing, to the bigger picture.    The effects of treatment felt like a walk close to death, undoubtedly the lowest point in my life but it helped me to appreciate so much in life.  There is hope....keep fighting! ... View more

HI Maurie,   I had forgotten all about the things I used to get through treatment but you describing the burning in the mouth and the pain when eating brings back memories of dark days!.....What came to my mind was the DIFFLAME spray.....I used this every time I ate (when I could still eat) then later before drinking the shakes when I couldn't eat anymore.   https://www.chemistwarehouse.com.au/buy/3446/difflam-anti-inflammatory-throat-spray-30ml   You can find it at chemist warehouse or ask your oncologist to prescribe it for you as it can get expensive if it works for you, you will be using it a lot.  I found it extremely helpful in keeping the intake up.  I didn't get a peg so was able to get liquids down for the entire treatment, saying that by the end it was very minimal and after treatment nothing for a few days....just water....even that was so hard.   Do you have a peg?  That can really ease the pain involved in eating and drinking as it does get harder and ramps up pretty quickly by the end.  Do you have a good support network?  family etc.  It really helps to have that support to keep your morale high and positive despite the terrible face of all this.   I highly recommend the fentanyl patch.....it really really helped me ease the pain....I used them even up until a month out of treatment for pain.   With chemo I also had an unknown primary but it had only affected one lymph node which they dessected.  Everyone has there own plan from oncology and you don't want to jeopardise any margins of being cured.  I know it is a scarey place to be at the moment but keeping reaching out and staying positive.....it will pass and hopefully soon you will look back as we do and have forgotten what drugs we took to get through it all!   All the best for another week down and a step closer to being out of treatment and towards recovery.   We are all feeling you Maurie!   ... View more

HI Maurie,   I really feel for you....it is such a devastating diagnosis and the treatment is no better.  I am sure you have scoured this thread for all the infos on what may come your way in the next month or two.  My advice is to just ride with each step of it....deal with things as they happen and focus on that.  Yes the side effects are immense and there is no quick fix for the after math either but do try to stay positive.  Remember we are the "lucky" ones that can receive treatment and our diagnosis is treatable and curable! For the constipation I also had the same chemo as you....and unfortunately suffered the same.  I can only advise you to keep up your liquids as captain australi has advised and try eating different things that help.  I found figs really helped fresh ones, dates, prunes.  I only had one round of chemo as I refused the other two due to just not being able to do rad and chemo....for me rad was my main treatment with chemo as an extra precautionary approach. Doing more chemo would definately have affected my ability to continue rad so it was decided to leave it.   Just take one day and one week at a time....each day done is another one you don't need to ever do again! ... View more

Kerrie Jane,   With the nebuliser he needs to use it regularly....I was using it every couple of hours even more....once will not have much effect.  I know it is a real pain to sit there and inhale but this is definately something you can assist him with, just making sure he is getting it regularly.  Showers are also another thing that helped, as Captain Australi mentioned.   You said you are going into week 9 of treatment, I understood he was getting 7 weeks of rad....has he completed his radiation now? ... View more

HI there Kerrie Jane,   Sorry you and your partner are having to see this nasty side of life.  The bright news is that your partner is probably at the peak of his side effects right now.  I personally faced the worst days of my life the weekend and week immediately after treatment had ended, I felt I journeyed to the edge of no return.  Time is the biggest healer right now, the treatment is over and now it is all about recovery.  It is slow, excrutiatingly slow, but each day and each week will be better.....be ready for a slow recovery....but it will happen.  With the mucus I know Captain Australi suffered long and hard with the mucus, hopefully he will pop in and give you some of the tips that worked for him.  I too suffered with it from about week 4 of radiation up until around  a few months after treatment. At its peak I had to sleep in an upright position as it prevented me from breathing if I lay down.  So a high pillow of elevated sleepign position helps.  Steam really helps loosen it, I used a neubuliser provided by the hospital for the good part of 6 weeks.  It really did help me.  My last two weeks of rad I would have to use the neubuliser before laying on the rad table to get treatment.  I also bought a humidifier for my bedroom, the stream and moist air assisted me a lot in loosening the mucus to get rid of it.  Yes, there will be a lot of spitting and gagging for awhile to remove that mucus.  I kept a plastic bag beside my bed at night and would awaken repeatedly to spit into it.  It will gradually get better...when?....well for memory it was around the two to three month mark out of treatment I noticed a difference.  Now (almost 2 years out), I still get a slight build up once or twice a day but it is minimal.  So my advice try to source a neubuliser from your treating hospital ..... they should be able to provide you with some liquid saline to put into it. Hopefully the others will jump back on and give you more info and tips.  Keep positive for your partner, it really is a terrible thing to endure physically, mentall and spiritually....absolutely and utterly the pits.  He will get better but as I said it is a slow recovery, that was one thing that really frustrated me the small steps to being "normal" again.  ANyone that has gone through this horrendous treatment will tell you post treatment you will discover a new normal. All the best Kerrie.....here's to a good recovery!  ... View more