Hi Everyone,

My mom finished her Radiotherapy at the end of November, she had four weeks radio with chemo.

The Doctors said that she should be feeling better by christmas, however we are now into Feb, and she is still really sturggling to eat and drink. She is trying, but as soon as she has eaten her throat is red raw again.

Wonder if anyone could advise how long it takes to recover from, also she still has one big ulcer on the side of her tongue which is getting smaller, but is still quite big, maybe size of a 5p coin.

Also have the results of moms PET scan on the 12th March, and it really is getting to me now, its the waiting as they say!

Oliver

quote:

Wonder if anyone could advise how long it takes to recover from, also she still has one big ulcer on the side of her tongue which is getting smaller, but is still quite big, maybe size of a 5p coin.

According to our survey How long does mucositis last?:

From the experience of the 17 participants so far:

• 8 or 47% experienced mucositis/mouth ulcers up to 8 weeks after the end of radiotherapy
  
• 3 or 18% experienced mucositis/mouth ulcers between 8 - 16 weeks after the end of radiotherapy.
  
• 6 or 36% suffered for more than 16 weeks (over 4 months)

Sounds to me like your mom is pretty much on schedule. For me it was a gradual process of about a year to get back my weight, stamina, etc. The key was finding foods I could swallow, and getting sunshine and exercise. The tongue ulcers heal up eventually, but its hard to make much progess until you use trial and error to find some foods to swallow.

hi oliver
it can take quite a while for the mouth area to recover,i could not eat anything for a good year and solely relied on my peg for feeding.one of the nurses in the hospital told me to try pineapple as it was good for the mouth.big mistake! the pain was so bad i cried for 15 minutes i was in agony.the ulcers are so painful and do put you off of eating.i have subtle savoury tastebuds but no sweet taste buds and after 3 years anything sweet tastes disgusting to me, yet i yearn for a bit of chocolate.i was given gelclair to use ,it comes in sachets and you mix it with water and swill it all around your mouth and coats the ulcers and does bring relief for a little while.if she asked her doctor for it she may find it helpful.the hospital could not prescribe it for me as it was too expensive for their budget but they sent me to the g.p for some.i never used all the sachets so i passed them on to the radiotherapy dept for other patients to use because they gave me 6 to try and said if the doctor prescribed it for me could they have any remainders that i had left.i was told i would soon be back to normal but i took a lot longer than i thought it would take.i hope she is feeling better soon and hope you get good news from the scan. love shirl xxx

hi oliver best regards to your mum, everyone seems to react diferently to treatments, for me i had to carry a bowl around to spit in for the first 3 or 4 months about 7 months before i was able to swallow anything it seems to take forever but time does pass and it gets easier, as for taste i can taste sugger but need more than normal so i have put on weight. unfortunatly i cant stand the taste of most fruits they taste verry bitter, also i dont have any saliva but thats a small price to pay. im sure your mum will be looking back and wondering how bad it was.it also helped me oliver, when my wife reminded me how far id come cause at times i felt i wasent getting any better. im sure your mum is well proud of you and im sure youl both sail through the next few months, jimmy.

Hi guys,

Thanks for replys, this site really does help to keep me sane! Shirl, mom was given the galclair, it really is helping her, as with yuo we had to go through gP, as the hospital pharmacy refused to prescribe! Its good stuf. We were also advised to try pineapple, but fortunatly mom refused to have it near her! Did you have a PET scan afterwards shirl? The oncologist has advised that alot of PET scans do come back positive even when there is no cancer activity, apparently the scan will pick up and cells with a fast turnover, and he said because of the radiation and healing things may be flagged up that are nothing...so why do it I wonder!!!!ahhhhhh

Jimmy, mom had the same problem as you at first,also she feels like she is getting worse, but I can see real improvments..daily. she really wants to go back to work now, shes getting bored at home she says-charming, and I thought I was good company!

Heres hoping that the PET comes back clear and we can return to normality, whatever that is!

Oli

Hello Oli

Mucositis is very common side effect of radiotherapy ad causes ulcers you can see and others you can't in the throat. They cause a lot of pain. Some things tried by others and found helpful are listed in this previous post. Many patients have found Gelclair helpful. More information also on the USA Gelclair site. A more recent product on the market which some have found helpful is MuGard. You can get your doctor or oncologist to prescribe either.

Best wishes
Vinod

hi oli
great that your mum got the gelclair,wise for her to say no to the pineapple i wish i had not been so keen to try it.yes i had a scan after and was given the news that the treatment had worked so that was a great day.if your mum feels up to going back to work that is fantastic but suggest to her that if she can just do a few hours a week to see how it goes.it sounds to me like mum is on track with everything regarding her treatment but it is a slow process.please give your mum my best wishes and i hope the scan gives her the news she wants.take care love shirl xxx

Hi
It took me between 9 to 12 weeks to recover from the ulcers in my mouth i found gelclair excellent